how to participate in a research study

• U.S. Department of Health & Human Services

• Virtual Tour
• Staff Directory
• En Español

You are here

Nih clinical research trials and you, finding a clinical trial, around the nation and worldwide.

NIH conducts clinical research trials for many diseases and conditions, including cancer , Alzheimer’s disease , allergy and infectious diseases , and neurological disorders . To search for other diseases and conditions, you can visit ClinicalTrials.gov.

ClinicalTrials.gov [ How to Use Search ] This is a searchable registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.

Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read the disclaimer on ClinicalTrials.gov for details.

Before participating in a study, talk to your health care provider and learn about the risks and potential benefits.

At the NIH Clinical Center in Bethesda, Maryland

Search NIH Clinical Research Studies The NIH maintains an online database of clinical research studies taking place at its Clinical Center, which is located on the NIH campus in Bethesda, Maryland. Studies are conducted by most of the institutes and centers across the NIH. The Clinical Center hosts a wide range of studies from rare diseases to chronic health conditions, as well as studies for healthy volunteers. Visitors can search by diagnosis, sign, symptom or other key words.

Join a National Registry of Research Volunteers

ResearchMatch This is an NIH-funded initiative to connect 1) people who are trying to find research studies, and 2) researchers seeking people to participate in their studies. It is a free, secure registry to make it easier for the public to volunteer and to become involved in clinical research studies that contribute to improved health in the future.

This page last reviewed on November 6, 2018

Connect with Us

• More Social Media from NIH

Participating in a Clinical Trial or Study

Clinical research and trials offer hope for many people and a chance to help researchers find better treatments for others in the future. However, they wouldn't exist without the people who volunteer to participate. By volunteering you may help researchers:

• Help other people who are sick.
• Find safer or better treatments.
• Find ways to improve medical care.
• Learn more about how the human body and mind work.

Clinical Research Participants

Clinical trials require different types of people. Each type chooses to participate for different reasons.

• Healthy Volunteers Healthy volunteers play an important role in research because they help define “normal” ranges. While they may receive no direct benefit, healthy volunteers may choose to participate in clinical research because they want to help others and contribute to advancing science.
• Patient Volunteers People with a health condition or disease may take part in a research study to gain access to a new therapy; take a more active role in their health; or contribute to better understanding, diagnosing, or treating that disease or condition. While some patient volunteers may receive a direct benefit from participating, the overall goal of the clinical trial may be to understand the risks and benefits of a treatment and to scientifically prove whether it is effective.

Who Can Participate?

Researchers use a list of rules called eligibility criteria to decide who is eligible to be in the study. These criteria ensure it is safe for you to participate. They also ensure the study results are due to the treatment being studied and not other factors or chance.

“Inclusion criteria” are factors that allow someone to be included in the study. “Exclusion criteria” are factors that disqualify someone from being in a study. These factors can include:

• Type and stage of a disease
• Previous treatment history
• Other medical conditions

Deciding to Volunteer

There are different ways to participate in clinical research. You may need to visit the hospital, medical or research office, or nursing home. Or you may participate in a classroom, in your own home, or through an online survey or questionnaire. Types of participation can include:

• Completing a questionnaire about health or behaviors, or answering questions in an interview with researchers.
• Donating a tube of blood or a tissue sample.
• Taking part in a clinical trial to find out if new therapies are safe and effective.
• Helping researchers understand how the healthy body works.

Our doctors and providers offer many opportunities for you to participate in clinical research.

Understanding the Risks

Clinical research can have risks, just like routine medical care and the activities of daily living. While some of the risks are minor, other risks are more serious. Some clinical research participants may experience complications that require medical attention. It is rare for people to be seriously injured or die from complications related to clinical trial participation. When considering whether to participate in a clinical trial, it’s important to understand:

• The possible risks of being in the study.
• The level of risk or harm.
• The chance of that risk or harm happening.

Where to Find the Risks

The risks of a specific research study are described in detail in the informed consent form and will be explained to you by the study team. The study team will also explain the purpose of the study and what will happen while you are in it and will answer any questions you have.

Questions to Consider Before Volunteering to Be in a Study

Educating yourself about the study and its risks and benefits will help you determine if participation in a clinical trial is right for you. The research team should be able to answer your questions before you decide.

While every study is different, here are some general questions you will want answers to before you decide. Most of this information will also be in the informed consent document you will need to sign before you join a study. You can also download a PDF of the questions below and print it before you meet the study team.

• What’s the condition being studied?
• Why is this study being done?
• Why is it important?
• Why is the study needed and what important questions will it answer?
• If this is a clinical trial, what phase is it?
• Has it been tested before?
• What were the results of earlier studies of this treatment?
• How likely are those results to apply to me?
• How do they compare with what I would receive if I don’t join the study?
• What alternatives are available to me?
• Will my doctor know?
• Is there a placebo in this study?
• How could the study treatment affect my daily life?
• Will I have to be hospitalized for any of the tests, procedures, or treatments?
• Who can be in the study?
• How long will the study last?
• What will happen to my samples (blood, tissue, etc.) that you collect for the study?
• How do they compare with standard treatment?
• What are the possible benefits of participation?
• Are there reasons I might be removed from the study?
• Who will be in charge of my care?
• Will this study require extra time or travel from me?
• Who is sponsoring the study?
• Will I be paid for participating?
• What will my health insurance cover?
• How will you protect my privacy and the confidentiality of my health and research records?
• What happens if I become sick while participating in the study?
• Can I choose to remain on this treatment after the study is over?
• How are the study data and patient safety being monitored?
• When and where will study results and information go?
• Will you tell me about my personal results?
• Will you tell me the overall study results when it is completed?
• How long do I have to decide whether or not I want to participate?

Follow us on Facebook and Instagram .

• Guide to Clinical Trials Your participation makes a difference
• Clinical Trials in Children Designed to improve kids' health
• Data and Results Sharing our Results
• Integrity and Transparency Building Trust
• Diversity Equity and Representation
• Plain Language Study Results Trial Result Summaries
• Expanded Access & Compassionate Use Possible Treatment Options
• Find a Trial
• Rare Disease Smaller populations but big impact
• Internal Medicine Extending lifespans worldwide
• Inflammation & Immunology Treatment at the molecular level
• Vaccines Preventing the spread of infections
• Oncology The science of optimism
• Anti Infectives Combatting an evolving risk
• Gene Therapy Breakthroughs become treatments
• Medicinal Sciences The next generation of science
• Precision Medicine Developing tailored medicines
• Maternal Immunization Protecting newborns at the start
• mRNA Technology Unleashing the next wave of scientific innovations
• Diseases & Conditions
• Coronavirus Resources
• Product Pipeline
• Research Sites
• Branded vs. Generic Learn the difference
• Biologics & Biosimilars Cures found in nature
• Commitment to Quality Maintaining the highest standards
• Global Supply Strategic manufacturing locations
• Manufacturing Sites Where medicine is made in the U.S.
• Health Literacy Learning to be well
• Treatment Choices Learning about treatment decisions
• Partnering With Patients Helping others by reporting side effects
• Tips for Patients Preventing medication errors
• Reporting Adverse Events
• Counterfeiting Preventing medication errors
• Product Safety
• Product List
• Product Contacts
• PfizerPro for Professionals
• Patient Assistance Programs
• Pfizer Distributors
• Announcements
• Behind the Science Features
• Press Releases
• Media Asset Library
• Updates and Statements
• Partnering News
• Media Contacts
• Executives Our senior-most leadership
• Board Members The people steering our company
• Scientists Our experts making discoveries
• Patient Stories Our patients
• Colleague Stories Our colleagues
• Ethics & Compliance Each of us is responsible
• Responsible Business Breakthroughs that change patients’ lives
• Patient Advocacy & Engagement Putting Patients First
• Global Impact Meeting urgent needs worldwide
• Diversity, Equity, and Inclusion Everyone has something to offer
• Environmental Sustainability Our responsiblity to the environment
• Human Rights Furthering dignity and worth
• Health & Safety
• Intellectual Property The benefits of fair competition
• EHS Governance
• Misinformation
• Grants Support for independent research
• Political Partnership Supporting like-minded organizations
• Working with Healthcare Professionals Collaboration to improve lives
• Prescription Value & Pricing How to lower patient costs
• Privacy Principles Commitment to personal data privacy
• Ready for Cures Improving Access to Medicines
• Transparency in Grants Committed to Disclosure
• Policy Positions
• Investors Overview Information for stockholders
• Why Invest Why to join us in our mission
• Events & Presentations Calendar of upcoming events
• Financial Reports Quarterly reports and more
• Investor News Announcements about our performance
• Stock Information Charts and data
• Shareholder Services Information on stock transactions
• Corporate Governance Overview Gaining insight into our performance
• Board Committees & Charters Defining the corporate structure
• The Pfizer Board Policies Ensuring ethical leadership
• Corporate Governance FAQs Learn more about our approach
• Contact Our Directors Email any of our Directors
• Research and Business Development Partnerships
• Venture Investments
• Business to Business
• Pfizer CentreOne
• Pfizer Ignite
• Submit Your Opportunities

Guide to Clinical Trials: Potential Breakthroughs Put to the Test

Every modern prescription medicine we have today was studied in hundreds, and often thousands, of people in clinical trials. Your decision to take part is personal. But being part of a clinical study can make a difference in the lives of other people

Finding a Clinical Trial That’s Right For You

If you’re considering joining, you’ll be connected with a team of medical professionals who will assess if you’re a good fit for their specific study. You then go through a screening and consent process where you’ll have the opportunity to ask questions and make sure the study is also the right fit for you.

You’ll answer questions about your health and medical history (usually online or over the phone) and make an appointment to learn more.

At your appointment, you’ll spend time with the study team to review the details of the study, including possible risks and benefits, so you’ll know what to expect. If you decide to participate, you’ll give written permission for additional screenings and access to your health records.

This visit will confirm that you meet the study requirements. It includes a more detailed review of your medical history and a physical exam. It may also include additional tests related to your condition.

Taking part in a research study is different from regular medical care. When in a study, you’ll primarily interact with the study team—the study doctor, nurses, and potentially others who work with the doctor.

• You may have additional scheduled visits and procedures, extra laboratory tests, and/or follow a modified treatment plan.
• You can stop participating at any time—the decision to stop will not affect your regular medical care or any benefits to which you are entitled.
• Where permissible, reimbursement for study-related expenses—such as parking and travel—may be provided.
• To research a study drug for efficacy and safety, some participants are given the study drug and others are given standard of care or a placebo. Before you consent to join, you will be told how the study works.

Clinical Trial Resources

Learn more about the process of joining a clinical trial and find a trial near you..

Clinical Trials

Your participation in a clinical trial can make a world of difference.  learn more about the process of joining a clinical trial and find a trial near you..

Masks Strongly Recommended but Not Required in Maryland, Starting Immediately

Due to the downward trend in respiratory viruses in Maryland, masking is no longer required but remains strongly recommended in Johns Hopkins Medicine clinical locations in Maryland. Read more .

• Vaccines  
• Masking Guidelines
• Visitor Guidelines  

Understanding Clinical Trials

Clinical research: why take part.

Medicine and patient care would not be where they are today without advances made through clinical research—medical studies that involve people. But clinical research is not possible without people who volunteer to participate. Johns Hopkins researchers ensure that our research participants are a key part of the clinical research team.

The findings from clinical research at Johns Hopkins Medicine add to the world’s knowledge about health, disease, prevention, and treatment.

Reasons People Take Part in Clinical Research

People volunteer to participate in clinical research for reasons that include:

Helping Others

They want to help researchers learn how patients in the future can have better outcomes.

They have a medical condition that a study is evaluating new treatments for. They hope it benefits their own health and/or the health of other people with the same condition.

Some clinical studies pay those who participate.

Many participants like the extra health care they receive during a study. When people participate in clinical research, they are monitored and cared for by both the research team and the medical staff helping with their overall care.

“Research participants are giving a gift to society.” —Liz Martinez, Johns Hopkins Medicine Research Participant Advocate

Informed Consent

The choice to participate in a clinical study is a personal one that people should make willingly, without pressure from anyone else. Whether they are healthy or have been diagnosed with a medical condition, people should take part in clinical research only if they feel informed about and comfortable with the entire process.

Informed consent is the key part of all clinical research. It ensures that people are thoroughly informed about a research study they want to take part in — before they agree (or do not agree) to participate.

Members of the research team explain the study details to every potential participant. They go over the question(s) the study seeks to answer, the possible risks and benefits of taking part, and the intervention being tested. They also explain what participants will be required to do as part of the study.

Only after people indicate that they completely understand these details can they freely agree (or decline) to participate. Taking part in clinical research is always voluntary, and participants are free to leave a study at any time.

Here are some questions to ask before agreeing to participate in a clinical research study:

• What is the main purpose of this study?
• How long is the study going to last and what will I be asked to do as a participant?
• Does the study involve a placebo (a harmless procedure or pill used to compare against the real treatment being studied), or will it study a treatment that is already on the market? Will my doctor know which one is assigned to me?
• How will the research intervention be given to me?
• What has been learned about the research intervention so far? Have any study results been published?
• Do I have to pay for any part of the study? Will my insurance cover these costs?
• Does the study pay for travel costs or childcare?
• Will I be able to see my own doctor during the study?
• If the research intervention works for me, can I keep using it after the study?
• Will I receive any follow-up care after the study has ended?
• What will happen to my medical care if I stop participating in the study?
• Do the researchers have any financial or special interest in the clinical study?
• How experienced are the physician and study staff?
• What is the study team doing to keep me safe?
• When and how will the results of the clinical trial be given to me?
• In a trial that includes placebos, will I learn which treatment I am receiving?
• Can anyone find out whether I am participating in the research study?

You may have many more questions. Some of these questions may not apply to the study you are considering. The study team is eager to answer all of your questions before, during, and after a study.

Video Clinical Research for a Healthier Tomorrow: A Family Shares Their Story

Clinical Research for a Healthier Tomorrow: A Family Shares Their Story

How to Participate in a Clinical Research Study

Whether they are healthy or have been diagnosed with a medical condition, people interested in taking part in clinical research should consider speaking with:

Doctors or nurses

They may know of studies to look into and/or be able to tell people more about those studies.

Family, close friends or a clergy member

Depending on someone’s health status, the decision to participate in clinical research can be a serious matter. It is often helpful to talk with someone you trust before deciding to participate.  Remember to ask these people what is the basis for their advice on clinical research. 

Study research team

Clinical studies typically have one or more contact people that can help potential volunteers decide if taking part is right for them.

Clinical Research at Johns Hopkins Medicine

Johns Hopkins Medicine leads and takes part in all types of clinical research as well as many individual studies. Scientists at Johns Hopkins Medicine lead some of the most innovative clinical research studies. Some of these are only available at Johns Hopkins and have been developed by our experts. It is our commitment to moving medicine forward that drives our researchers to practice at the highest levels of responsibility for our clinical research. 

We encourage people with medical conditions to talk with their doctors or with any of our research coordinators about current Johns Hopkins clinical research studies as soon as possible after their diagnoses. This is because many trials have certain rules to decide what types of participants they are looking for.

What do we know about the Research Participant experience at Johns Hopkins?

“Research participants are so important to the mission of Johns Hopkins that we have made it a priority to routinely get feedback from our research participants about their experience,” says Daniel Ford, .M.D., M.P.H., director of Institute for Clinical and Translational Research.

Starting in 2016, Johns Hopkins Medicine started a program to ask a random sample of research participants about their experience through a comprehensive survey. 

• Over 1,000 people have completed this survey, and results indicate that the vast majority reported a satisfying experience.
• 80% rated their overall experience in research between 8 and 10 on a 10 point scale.
• 97% stated they would recommend a family member or friend to join a research study.
• 98% reported that the Institutional Review Board consent process prepared them for what they experienced in the study.
• They also gave high marks to the communication skills of the research team.
• A majority reported feeling they were valued members of the research team all of the time they were in a study.

The results of these surveys are available online .

Learn More About Clinical Research at Johns Hopkins Medicine

For information about clinical trial opportunities at Johns Hopkins Medicine, visit our trials site.

Be part of tomorrow's healthcare breakthroughs

When you participate in a University of Minnesota study, you can help create a healthier future.

Find a study that's right for you

Advanced search, how you could make a difference.

• Help someone who needs it - Your participation in research could benefit a friend, a family member, or someone across the world.
• Make healthcare better for everyone - Healthcare is safer and more effective for everyone when people from different backgrounds, ages, genders, races and ethnicity participate in health research.
• Help researchers solve health problems - Volunteers play a key role in research and make new discoveries possible. Your participation helps researchers find new ways to prevent, detect, or treat disease.

Featured research opportunities

Research 'on a stick'

The Driven to Discover Research Facility is an opportunity for fairgoers to participate in research in a fun, convenient way. Check out this year's featured studies, and join us at the Minnesota State Fair from August 22 to September 2!

Healthy volunteers needed

Healthy volunteers play a vital role in research. Some research studies rely on participation from healthy volunteers (people who do not have the condition being studied) to provide data that is used as a comparison for patient groups.

Research at the CSC

The M Health Fairview Clinics and Surgery Center houses a wide range of specialists all in one, easy to access location on the U of M campus. Find studies taking place in this unique space where clinical care and research connect.

Research participants have rights

Every study is different. Some studies are looking for people with certain conditions, while others are open to healthy volunteers. Some studies involve visits to a clinic, while others can be done online.

One thing that is common to all research is that the decision to participate is personal and always voluntary. Whether agreeing to share your medical data or consenting to an experimental treatment, we want you to know that research participants have rights and protections.

Click the link below to read the research participants' Bill of Rights and to learn more about how the University of MInnesota reviews, approves and monitors research studies.

Join a national registry!

ResearchMatch

ResearchMatch.org connects volunteers with research studies across the country. Volunteers of any age, race, ethnicity, or health status are invited to join. Log on, register, and receive emails when studies might be a good fit for you.

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

• Advanced Search
• Journal List
• J Med Internet Res
• v.23(5); 2021 May

Maximizing Participant Engagement, Participation, and Retention in Cohort Studies Using Digital Methods: Rapid Review to Inform the Next Generation of Very Large Birth Cohorts

Joanna nkyekyer.

1 Murdoch Children’s Research Institute, Parkville, Australia

2 Department of Paediatrics, The University of Melbourne, Parkville, Australia

Susan A Clifford

Fiona k mensah, yichao wang, lauren chiu.

3 Faculty of Medicine, Nursing and Health Sciences, Monash University, Clayton, Australia

Melissa Wake

Associated data.

Search query for systematic reviews and meta-analyses in OVID MEDLINE (search conducted on December 19, 2019).

Study-specific research questions and answers provided in reviews to achieve high participant engagement, participation, and retention.

Methodological quality of included systematic reviews.

Many current research needs can only be addressed using very large cohorts. In such studies, traditional one-on-one phone, face-to-face, or paper-based engagement may not be feasible. The only realistic mechanism for maintaining engagement and participation at this scale is via digital methods. Given the substantial investment being made into very large birth cohort studies, evidence for optimal methods of participant engagement, participation, and retention over sustained periods without in-person contact from researchers is paramount.

This study aims to provide an overview of systematic reviews and meta-analyses evaluating alternative strategies for maximizing participant engagement and retention rates in large-scale studies using digital methods.

We used a rapid review method by searching PubMed and Ovid MEDLINE databases from January 2012 to December 2019. Studies evaluating at least 1 e-engagement, participation, or retention strategy were eligible. Articles were screened for relevance based on preset inclusion and exclusion criteria. The methodological quality of the included reviews was assessed using the AMSTAR-2 (Assessing the Methodological Quality of Systematic Reviews 2) measurement tool, and a narrative synthesis of the data was conducted.

The literature search yielded 19 eligible reviews. Overall, 63% (n=12) of these reviews reported on the effectiveness of e-engagement or participation promotion strategies. These evaluations were generally not conducted within very large observational digital cohorts. Most of the contributing reviews included multipurpose cohort studies (with both observational and interventional elements) conducted in clinical and research settings. Email or SMS text message reminders, SMS text messages or voice notifications, and incentives were the most commonly used design features to engage and retain participants. For parental outcomes, engagement-facilitation interventions influenced uptake and behavior change, including video feedback, goal setting, and intensive human facilitation and support. Participant-stated preferences for content included new knowledge, reminders, solutions, and suggestions about health issues presented in a clear, short, and personalized way. Perinatal and postpartum women valued self-monitoring and personalized feedback. Digital reminders and multiple SMS text messages were specific strategies that were found to increase adherence to medication and clinic attendance, respectively.

Conclusions

This review adds to the growing literature evaluating methods to optimize engagement and participation that may apply to large-scale studies using digital methods; it is promising that most e-engagement and participation promotion strategies appear to be effective. However, these reviews canvassed relatively few strategies, suggesting that few alternative strategies have been experimentally evaluated. The reviews also revealed a dearth of experimental evidence generated within very large observational digital cohort studies, which may reflect the small number of such studies worldwide. Thus, very large studies may need to proactively build in experimental opportunities to test engagement and retention approaches to enhance the success of their own and other large digital contact studies.

Introduction

Adult cohort studies (such as the UK Biobank, recruiting 500,000 participants and costing approximately £250 million (US $349 million) to date [ 1 ]) have demonstrated the power of mega-cohorts to transform the speed, precision, and capacity for high-value new knowledge for health and health care delivery. Unfortunately, high-profile early life initiatives of similar size and ambition, such as the US National Children’s Study and UK Life Study, were withdrawn despite £0.8 billion (US $1.2 billion) and £38 million (US $59 million) funding, respectively [ 2 , 3 ], in large part because they stumbled at the first hurdle of engagement and uptake. Others, though successful in recruitment, have had substantial attrition over time [ 4 ]. Thus, a limited science of engagement and retention poses a critical hurdle to such studies in meeting their vision of advancing human health.

Engagement is defined as “the extent to and manner in which people actively use a resource and has been operationalized as a multistage process involving the point of engagement, a period of sustained engagement, disengagement, and reengagement” [ 5 ]. Many factors may influence the engagement process at different time points. In a research study, indicators of poor engagement may include low initial uptake from the first point of contact or reduced interaction over time, in some cases leading to complete disengagement or dropout. Engagement strategies have been developed to enable cohort studies—both observational and interventional—to meet their aims (eg, improving health behaviors and outcomes) by allowing regular, sustainable engagement with large numbers of participants via remote or digital-only studies [ 6 ].

e-Engagement incorporates the participation, recruitment, and retention of participants through digital platforms. Factors that may improve participant e-engagement include its technical features, content, frequency of waves, and engagement-facilitation interventions (EFIs) [ 7 ]. User characteristics and digital platform features should also be considered. Ritterband et al [ 8 ] simplified this in their internet intervention model, hypothesizing that behavior change is influenced by the stepwise progression of environmental factors, support, and website characteristics affecting adherence, which then affect behavior change (ie, sustained participant engagement) through various mechanisms of change. Thus, maximizing e-engagement can improve the efficiency of research processes and reduce both administration costs [ 9 ] and the validity and power costs of significant and systematic nonuptake and attrition [ 10 ] in major studies.

Given the expense of longitudinal cohort studies, effective strategies that engage and retain cohort participants are critical to the integrity of research outcomes [ 11 , 12 ]. The retention of study participants is vital to ensure the power and internal validity of longitudinal research [ 13 - 15 ], whereas participant engagement is important for evaluating the efficacy and generalizability of the program under study. A review of randomized controlled trials [ 16 ] suggests that delays in participant recruitment or high dropout rates postrandomization may lead to uncertainty in treatment effectiveness and possibly confound results. For example, in the case of technology-based intervention studies, the technology may change over time if recruitment is prolonged, potentially leading to artifacts or differential effects on treatment outcomes. Proposed retention strategies involving (1) contact and scheduling methods, (2) visit characteristics, (3) study personnel, (4) nonfinancial incentives, (5) financial incentives, (6) reminders, (7) special tracking methods, (8) study description, (9) benefits of study, (10) reimbursement, (11) study identity, and (12) community involvement [ 17 , 18 ] may influence participant retention rates. However, there is limited experimental evidence and data for the in-depth exploration of retention strategies and their implementation.

With the recent growth in experimental research on the optimization of digital methods in longitudinal cohort research studies, there is a need for the literature to be collectively synthesized at a pace reflecting the rapid evolution of technology.

The objective of this review is to provide an overview of strategies that enhance engagement, participation, and retention rates in large-scale digital contact studies, comparing digital methods with alternative (digital and nondigital) methods. This work has been undertaken as part of the design of the forthcoming Generation Victoria (GenV) study [ 19 ]. GenV is a whole-of-state birth and parent cohort being planned in the state of Victoria, Australia. After initial face-to-face recruitment, the majority of contact with study participants will be via digital methods. The findings of this review are expected to inform GenV and other very large birth cohort studies in planning.

Protocol Registration

The protocol of this rapid review was registered with PROSPERO (International Prospective Register of Systematic Reviews; registration number CRD42020155430). We followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement to report our systematic review [ 20 ].

Research Questions and Definitions

In the context of the administration of large-scale digital contact cohort studies, we investigated the following research questions:

• What technical design features aid engagement, participation, and retention?
• What EFIs aid engagement, participation, and retention?
• What feedback is valued by parents with young children?
• How effective are e-engagement, participation, and retention interventions?

We used the following definitions throughout:

• Engagement: the proportion of participants who receive, open, and actively engage in a survey or an assessment wave. Incorporates the study being able to contact the participant, and the participant being motivated to start the activity.
• EFI: the approach used to increase the acceptability of a web-based program.
• Participation: the proportion of participants who completed a survey or an assessment. Incorporates the participant having time to complete the activities, understanding how to complete the activities, and being willing to provide information about themselves and their family.
• Retention: the proportion of participants who participate across successive waves. Incorporates the study being able to contact the participant and the participant wanting to continue to participate.
• Review: reporting on overall findings of an included systematic review.
• Study: reporting on findings of an individual study reported within a systematic review.

Electronic Searches

Four authors (MW, JN, SAC, and YW) developed the search strategy and refined the searches with an experienced librarian. The search queries used to retrieve our systematic reviews and meta-analyses are presented in Multimedia Appendix 1 . Literature searches were performed in PubMed and Ovid MEDLINE databases using both MeSH and free-text words. The results from each search engine were downloaded into an EndNote (Clarivate Analytics) reference library and saved in Covidence (Veritas Health Innovation Ltd). Duplicate studies across the combined groups were removed. We also consulted experts and manually searched for relevant studies.

Selection of Reviews

Two authors (selected from JN, YW, and LC) independently screened each paper title and abstract for relevance. The full text of the remaining papers was independently screened by two of the authors (selected from JN, YW, SAC, and LC). Any disagreements were resolved by consensus. To ensure a standardized process for our review, the author’s pilot-tested titles and abstracts, and full-text screening with a sample of papers. This information helped refine the inclusion and exclusion criteria.

Inclusion Criteria

Study types.

As this was a rapid review, we examined only systematic reviews and meta-analyses (not individual source studies) pertinent to large-scale cohort studies. We included studies with observational and/or interventional elements conducted in clinical and research settings. As digital technology is moving so rapidly, we limited our search to reviews published between January 2012 and December 2019, reasoning that these would include relevant older studies while being most technologically relevant to the needs of cohorts being planned in the 2020s.

Studies were eligible if they evaluated at least one of the following e-engagement, participation, or retention strategies (note that testing these strategies could occur in the context of a trial of therapeutic intervention):

• Alternative contact metrics: for example, frequency per month or year; time of the month, week, or day; duration of each contact; and reminder content and frequency.
• Reimbursement and gifts or penalties: for example, payments for survey completion, small gifts, or store discount codes.
• Feedback features: for example, presented as participant’s responses or performance at the point of completion; progress over time (with or without comparison with the population); a report sharable with care providers; and thank you certificates.
• Content features: for example, assessments relevant to the life course approach or development stage of participants and/or their child; the balance of positive and negatively framed questions; ease of understanding; cognitive burden of assessment or survey items; and interest.
• Technical and design features: for example, native or web app, can leave and return to assessment, the appearance of the interface, gamified interface, and visual progress tracker.
• Study design features: for example, messages personalized with participant names and study staff contactable to answer questions.
• Target participant characteristics: for example, demographic, motivation, or burden of disease.
• Communication modes: for example, visual, auditory, text, and real person or avatar.

Participants

As the respondents in large birth cohorts are usually parents for the first decade of life, our primary focus was adults aged <50 years. Where evidence existed, we considered parents of children aged between 0 and 5 years.

Comparators

Alternative standard delivery strategies such as mail, fax, and other digital interventions (DIs).

Outcome Measures

Participant engagement in, completion of, and retention in digital study (survey and assessment) waves throughout short and long periods.

Exclusion Criteria

For initial title and abstract screening, we excluded the following publications: the primary focus (participant) was adults ≥50 years or children as the primary respondents; publications not written in English; and publications with full text not accessible through the University of Melbourne library.

Additional criteria for the full-text review screening were not reporting our outcome metrics of engagement, participation, or retention; focusing on low-income countries; and focusing on rare or uncommon conditions such as HIV or cancer.

Data Extraction

A data extraction template was developed and piloted by the authors (JN, YW, SAC, and LC) in 3 reviews. The template contained general review information (author and search dates), characteristics of included studies (number of relevant studies, study designs, health topics, population age, and geographic area), e-engagement, participation, and retention promoting strategies, the methodological quality of systematic reviews, and a summary of review results and conclusions.

Data were extracted independently by 2 of the authors (selected from JN, YW, SAC, and LC), and any discrepancies were resolved by consensus.

Data Synthesis

A meta-analysis was not performed because of the heterogeneity of intervention types, study designs, study populations, and outcome variables among the included studies. Instead, a narrative summary of the findings across studies was created based on study outcomes (ie, participant engagement, participation, completion, and retention) and strategies promoting these study outcomes.

Methodological Quality of Included Reviews

Two authors (JN and YW) independently assessed the quality of the included review methodology using AMSTAR-2 (Assessing the Methodological Quality of Systematic Reviews 2; a measurement tool to assess systematic reviews) [ 21 ]. The appraisal tool of AMSTAR-2 included 16 domains: whether there was a description of the PICO (population, intervention, control group, and outcome) components in the research questions and the inclusion criteria; the protocol of systematic review or meta-analysis; study design rationale; the literature searching strategy; study selection; data extraction; specific details of inclusion and exclusion criteria; adequate detail of the included studies; bias risk assessment of the included studies; the funding sources; appropriate statistical methods; the impact evaluation of the individual study’s risk of bias (RoB); the explanation of RoB in individual studies; a satisfactory explanation for any heterogeneity; adequate investigation of publication bias; and potential conflicts of interest. The answer options for the AMSTAR-2 were yes, partial yes, and no. Yes denoted a positive result. No represented that there was not enough information about the domain. Partial yes represented that it partially adhered to the standard. Discrepancies were resolved by consensus.

Search and Screening Results

The search strategy yielded 1080 systematic reviews. An additional 13 reviews were identified through a manual search of publications’ reference lists. Following the removal of duplicates, 1071 publications were screened. The title and abstract screening excluded 907 reviews. A total of 164 articles underwent full-text review, of which 19 publications [ 22 - 40 ] met the inclusion criteria. Figure 1 summarizes the search and screening process presented in the PRISMA format.

Search and screening process.

Characteristics of Included Reviews

On simple summing, the 19 reviews contained 437 studies and more than 556,000 participants (4 studies did not report the number of participants). Some studies and therefore participants are included in more than one review. Given that we aimed to identify strategies that may influence the outcomes of interest rather than synthesize an overall estimate (as per meta-analytic techniques), we did not see an overlap as problematic.

The characteristics of the included reviews are summarized in Table 1 . Most reviews contained studies of varying designs, spanning quantitative and qualitative analyses.

Systematic review characteristics.

a RCT: randomized controlled trial.

The 19 systematic reviews included studies conducted in both research (8 reviews) and clinical or health care (11 reviews) settings. Of these reviews, 4 examined young people and adults with mental disorders, anxiety, and depressive symptoms. Others examined engagement, participation, and/or retention in digital contact studies among perinatal and postpartum women, patients with chronic diseases, parents in neonatal intensive care units, human papillomavirus vaccine uptake in young children, vaccinations in adults, pregnant women, and uptake of preschool vaccinations.

Research Question 1: Technical Design Features That Aid Engagement, Participation, and Retention

We found 4 reviews [ 22 , 25 , 31 , 32 ] reporting on several technical design features to aid engagement, participation, and retention, including financial incentives (including gifts), digital pushes (SMS text message alerts), voice notifications, and email or SMS text message reminders and studies’ technical feasibility and usability (ie, informed consent). Email or SMS text message reminders and SMS text message notifications were reported in 4 reviews [ 31 , 32 , 36 , 37 ] as the most commonly used technical design feature to improve participation and completion rates. Two reviews reported the use of email or SMS text message reminders and voice notifications [ 36 , 37 ] to enhance study participation. Robotham et al [ 36 ] compared zero, one, and multiple SMS text message notifications and voice notifications.

Research Question 2: EFIs That Aid Engagement, Participation, and Retention

The following EFIs were reported by 5 reviews [ 24 , 26 , 28 , 30 , 35 ] as a means to aid uptake and participant engagement.

SMS Text Messages and Interactive Voice Response Messages

The review by Ames et al [ 24 ] examined perceptions and experiences of digital targeted client communication (ie, SMS text messages and interactive voice response messages) via mobile devices in the areas of reproductive, maternal, newborn, and adolescent health. The results suggested that many clients liked receiving messages from health services using mobile phones. Content preferences included new knowledge, reminders, solutions, and suggestions about health issues presented in a clear, short, and personalized way.

Intensive Guidance (Web-Based Interventions With Human Facilitation, Support, or Coaches)

According to the review by Baumeister et al [ 26 ], in treating mental health disorders, guidance, as a retention strategy, improved rates of completion (pooled completer rate: odds ratio 2.76, 95% CI 1.68-4.53; n=6) and the number of completed modules (pooled mean number of completed modules: standardized mean difference 0.52, 95% CI 0.37-0.067; n=7). Lim et al [ 33 ] reported on the use of lifestyle coaching as an EFI to aid DI uptake. DIs were perceived as positive, user-friendly, and acceptable. Engagement strategies employed in DIs were monitoring and feedback, goal setting, health professional input, and social support.

Videoconferencing and Video-Feedback Interventions

The review by Dol et al [ 28 ] reported the following EFIs to aid uptake across included studies: Baby CareLink (an educational and emotional support system for parents with children in the neonatal intensive care unit) [ 41 ], Skype, and FaceTime. In this review, no significant differences were found between parents who participated in an e-intervention or received standard care in terms of their reported anxiety and/or stress, possibly because of the greatly varied study design and type of eHealth technology across studies.

Garrido et al [ 30 ] summarized the use of web-based modules, learning materials, or activities; group chats or courses; online forums; web-based chat facilities with a mental health professional; games; and psychoeducational computer programs as EFIs to aid participant uptake. The pooled effect size on depression compared with a nonintervention control was small (Cohen d =0.33; 95% CI 0.11-0.55), whereas the pooled effect size of studies comparing an intervention group with an active control showed no significant differences (Cohen d =0.14; 95% CI −0.04 to 0.31). In addition, pooled effect sizes were higher when supervision was involved (for studies comparing digital mental health interventions with high human interaction vs no intervention: Cohen d =0.52, 95% CI 0.23-0.80; for studies comparing digital mental health interventions with high human interaction vs active controls with no supervision: Cohen d =0.49; 95% CI −0.11 to 1.01).

Web-Based Training Intervention in Behavioral Interventions and Video Training Materials

Parsons et al [ 35 ] reported that using video training materials compared with face-to-face training improved parent knowledge, parent intervention fidelity, social behavior, and communication skills of children with autism spectrum disorders.

Research Question 3: Feedback Valued by Participants With Younger Children

Feedback was valued by perinatal and postpartum women and parents in neonatal intensive care units, as reported by 4 reviews [ 24 , 28 , 33 , 34 ].

In the review by Merten et al [ 34 ], participants valued visual and personalized feedback, information, and tools for physical activity and dietary intake tailored to their self-monitored data during pregnancy. This feedback reinforced successes and/or offered motivational support and recommendations to achieve their goals. Ames et al [ 24 ] reported that the opportunity to offer feedback about needs, preferences, and experiences during pregnancy helped develop or improve the study intervention. In the review by Dol et al [ 28 ], parents valued a video-feedback intervention that guided them to reflect on their own successful interactions through recordings of parent-infant interaction and feedback from a video interaction guidance professional. According to Lim et al [ 33 ], many of the characteristics of DIs that postpartum women valued included feedback and goal setting. Women valued setting realistic goals through video consultation with their dietitian and tracking daily weight, exercise, and blood glucose levels in a web-based intervention, consistent with known key strategies for behavior change.

Research Question 4: Effectiveness of Engagement, Participation, and Retention Promotion Strategies

Overall, 63% (12/19) of reviews reported the effectiveness of e-engagement or participation promotion strategies. Table 2 summarizes the effectiveness of the various e-engagement, participation, and retention strategies reported in the reviews. Most findings were reported as relative rather than absolute differences, where numerical syntheses were provided (refer to Multimedia Appendix 2 [ 22 , 23 , 25 , 27 , 29 , 31 , 32 , 34 , 36 , 37 , 39 , 40 ] for further details on the answered research questions and strategies).

Interventions, main outcomes, and results of included systematic reviews.

a RR: relative risk.

b I 2 statistic: percentage of variation due to heterogeneity between studies.

c SMD: standardized mean difference.

d OR: odds ratio.

RoB for Included Systematic Reviews

The assessment of the 16 items of AMSTAR-2 from each included review is demonstrated in Multimedia Appendix 3 [ 22 - 40 ]; 11 systematic reviews were rated as critically low [ 22 , 23 , 25 , 26 , 30 - 36 ] and 8 [ 24 , 27 - 29 , 37 - 40 ] were rated as low quality. Items 7 and 10, as indicated in Table 3 , were rated as particularly low quality. All systematic reviews except 1 [ 29 ] reported potential sources of conflicts of interest, including any funding they received for conducting the review, but no review reported on the sources of funding for the studies included in the review. It is important to note that AMSTAR-2 does not evaluate the quality of the primary studies. Its objective is to evaluate the methodological quality of the systematic reviews, considering how well the systematic review was conducted (eg, literature searching and data pooling). Therefore, if a systematic review included primary studies with a high RoB but the review itself was well conducted, the review tended to be rated as high quality .

Overall confidence assessment (Assessing the Methodological Quality of Systematic Reviews 2 tool) of the 19 included systematic reviews.

a AMSTAR-2: Assessing the Methodological Quality of Systematic Reviews 2.

b MA: meta-analysis.

c PICO: population, intervention, control group, outcome.

d Items considered as critical domains in the AMSTAR-2.

e RoB: risk of bias.

In Table 3 , we detailed the overall confidence in the results of each included systematic review. Reviews performed poorly with respect to (1) reporting sources of funding for included studies (0/19, 0%), (2) adequately investigating publication bias (small study bias) and discussing its likely impact on the results of the review (4/19, 21%), and (3) providing a list of excluded studies and justifying their exclusions (6/19, 32%).

Out of the 19 reviews, 10 (53%) accounted for such bias in individual studies when interpreting and discussing the results of the review and 9 (47%) reviews used a satisfactory technique for assessing the RoB in individual studies included in the review. For reviews that used a satisfactory technique for assessing RoB, most [ 23 , 26 , 27 , 29 , 35 , 36 ] suggested that e-engagement, participation, and retention promotion strategies were effective.

Principal Findings

This study reviewed the current state of research comparing alternative strategies to maximize participant engagement, participation, and retention in large digital studies (as held in narrative and systematic reviews). We explored EFIs and study design features that aid engagement, participation, and retention. For reviews that met the inclusion criteria, there was substantial heterogeneity across studies in terms of e-strategies.

Most reviews show that e-engagement and participation promotion strategies are effective, which is promising. However, these reviews canvassed relatively few experimentally tested strategies, suggesting that the myriad of alternative strategies that may have been tested have not yet been the subject of reviews. Many studies have reported these features as a secondary goal of objectives such as adherence to therapy rather than as a primary goal in and of itself. From the 19 reviews, few contained very large digital studies that directly compared alternative strategies to examine impacts on engagement and retention; this may reflect the small number of such mega-studies worldwide. However, contributing reviews contained multipurpose (observational and interventional) cohort studies conducted in clinical and research settings. Motivation for study engagement, participation, and retention may differ somewhat between observational and clinical intervention studies where the participant can potentially directly benefit from participation, although the successful strategies make sense and at face value seem likely to generalize to both settings. In the absence of more tailored evidence, engagement strategies successful in intervention studies may be the best evidence we have, though they should be cautiously applied.

In the context of technical study design features, evidence suggests that using email or SMS text message reminders and voice notifications enhanced participant attendance to health care clinics. Although promising, these results should be interpreted with caution given the short duration of the e-intervention and reliance on self-reported medication adherence measures. Future studies need to determine the features of text message interventions that improve success and appropriate patient populations, sustained effects, and influences on clinical outcomes.

Human facilitation or support was important in influencing the uptake, engagement, and outcomes of digital technologies [ 26 ]. As illustrated by completion modules and completer rates, the larger effect sizes found in guided interventions suggested increased intervention adherence.

Reviews examining the effectiveness of e-engagement, participation, and retention interventions in the context of a health care intervention (rather than a cohort study) suggested the following:

• Visual and personalized feedback seemed effective, for example, for recordings of parent-child interaction in the neonatal intensive care setting [ 42 , 43 ]. This reinforces successes and/or offers motivational support to achieve an individual’s goals and is consistent with known key strategies for behavior change.
• In e-intervention studies, goal setting has mostly been used as a behavior change strategy [ 44 - 46 ], such as the Fishbein and Yzer Integrative Model of Behavioral Prediction and Fogg Behavior Model for Persuasive Design [ 44 ], Theory of Planned Behavior and Fun Theory [ 47 ], the Social Cognitive Theory [ 48 , 49 ], and the Coventry, Aberdeen, and London-Refined taxonomy of behavior change techniques [ 50 ].
• Using digital push interventions for vaccine uptake and series completion supported the idea that digital technologies could be a useful adjunct in improving vaccination rates. Reminder interventions for vaccinations have improved the completion of vaccination schedules.
• There was higher uptake when parental financial incentives or rewards were offered in quasi-mandatory schemes to increase the uptake of preschool vaccinations. Universal gifts were more acceptable than targeted parental financial incentives.
• Mental health apps were effective or partially effective in producing beneficial changes in psychological outcomes among young adolescents (ie, among college students). This is consistent with past meta-analyses of digital mental health programs for similar populations [ 51 , 52 ].
• Intensive guidance (with a human coach) was more efficacious than unguided interventions and a beneficial design feature, particularly for mental health studies. It is considered an adherence-facilitating measure in large digital research studies.
• Electronic text notifications improved attendance and reduced nonattendance (no-shows) across health care settings. Sending multiple notifications improved attendance rates.

Overall, no specific e-intervention strategy was identified as being superior. However, more interactive methods of delivery, such as videos and regular e-therapist contact for training, (1) improve adherence, (2) increase completion rates, and (3) improve fidelity. Further research is needed to understand the strategies that improve retention in longitudinal studies.

Limitations

We limited our search to systematic reviews published between 2012 and 2019. These reviews should give good reach into source studies during the preceding decade while encompassing the rapid evolution of technology and the explosion of digital methods in this period and thus relevant to the new studies of the 2020s. However, we acknowledge that this is an arbitrary choice. Although all of the literature sourced reported on studies using partial or fully digital contact with participants, much was in the context of interventions and may not be wholly applicable to observational cohort studies. Nonetheless, those strategies found to be successful in interventional settings seem worthwhile to explore in cohort studies. We obtained low-quality ratings for some systematic reviews. We also note that although high engagement and retention are the best strategies to obtain powerful representative data sets, statistical techniques such as multiple imputation are vital adjuncts.

Although all studies want to maximize the recruitment and retention of study participants, the best methods to do this, particularly in digital settings, are understudied. This review adds to the small but growing literature on methods for optimizing engagement and participation in digital contact cohort studies. Evidence-based recruitment and retention methods are particularly important to the success of the next generation of very large birth cohorts, which are very expensive but have low funding per participant and require high retention throughout decades despite participants having no or very little in-person contact with the study team. Ideally, such studies will not only use existing evidence-based methods but will also build on experimental studies of alternative engagement and retention methods to build the evidence base of the science of science .

Acknowledgments

This study was funded by GenV. GenV is supported by the Paul Ramsay Foundation, the Victorian Government, the Murdoch Children’s Research Institute, and the Royal Children’s Hospital Foundation (2019-1226). Research at the Murdoch Children’s Research Institute was supported by the Victorian Government’s operational infrastructure support program.

MW is supported by Australia’s National Health and Medical Research Council (NHMRC) Principal Research Fellowship 1160906. FKM is supported by NHMRC Career Development Fellowship 1111160.

Abbreviations

Multimedia Appendix 1

Multimedia appendix 2, multimedia appendix 3.

Authors' Contributions: MW conceived the study. MW, JN, and SAC designed the study. JN, SAC, YW, and LC conducted the review. JN drafted the first version of this manuscript. All authors contributed to writing the manuscript and read and approved the final review.

Conflicts of Interest: None declared.

Quick Links

• UW School of Medicine

Find Studies

Research studies are looking for volunteers just like you. Both healthy volunteers and participants with specific health conditions are needed to help answer important questions impacting the health of our friends and family. Join us to improve the health of others.

Study Categories

Healthy Volunteer Studies

Allergies & Immune System

Blood-Lymphatic System

Bones, Joints & Muscles

Brain & Nervous System

Cardiovascular

Child Health

Digestive System & Liver

Ear, Nose & Throat

Eyes & Vision

Food, Nutrition & Metabolism

Kidney & Urinary System

Lungs & Breathing

Mental Health & Behavior

Mouth & Teeth

Pain Management / Anesthesiology

Reproductive & Sexual Health

Skin, Hair & Nails

Sleep Disorders

Wellness, Lifestyle & Environmental Health

Women’s Health

Information for Research Subjects

Learn about becoming a research participant at the University of Rochester

True to the University of Rochester’s Mission Statement, ‘Learn, Discover, Heal, Create—and Make the World Ever Better’, research has been a long-standing tradition at the University of Rochester . Our researchers are among the nation’s leaders across a wide range of fields, including medicine, human behavior, education, politics, optics and economics.

Find an open research study

Faqs: participating in research.

Participating in research can be a fun and exciting way to give back to your community, but it doesn’t necessarily come without risk. Becoming a research participant is an important decision that should be taken seriously.

Background and overview

Research studies are done to discover new information or to answer a question about how we learn, behave, and function. Some studies might involve simple tasks like completing a survey, being observed among a group of people, or participating in a group discussion. Other studies, sometimes called clinical trials, involve more risky procedures like testing a new drug or medical device.

Each research study has its own set of criteria to determine who can participate. This depends on the research question being asked and may include restrictions based on age, behaviors, health status, or other traits.

Deciding to participate

Research is designed to benefit society. This might include learning how to live healthier lives, how to better treat conditions or diseases, why we do the things we do, or how we learn and develop. And while there are several reasons why people choose to participate in research, most people participate based on the possibility of helping themselves or others.

It’s important to understand that you may not directly benefit from participating in research. In fact, with a lot of research, you will not receive any benefit. For some types of research however, there may be a possibility that you could receive benefit, but there is no guarantee.

Most studies involve some risk, though the risks can range from very small to very serious. Some examples of risks include:

• side effects or reactions to experimental drugs, treatments, or procedures
• feeling anxious or uncomfortable
• breach in confidentiality or invasion of privacy.

Side effects or other risks you might experience may be temporary or go away with treatment, but in rare cases they may be permanent, cause disability, or be life threatening. There may also be risks in participating that we don’t know about.

To start, you will be given information about the study so that you can make an informed decision about whether or not to participate. You will also be given an opportunity to ask questions about the study. This process is called informed consent . Before you can start the study, you need to agree to participate (i.e., consent). Participation is always voluntary.

Once you provide consent, the specific procedures or activities you’ll be asked to complete can vary widely and depend on what is being studied. Regardless, all the activities you will be asked to complete will be described during the consent process.

Before you agree to be in the study, make sure you have a solid understanding of the following:

• the voluntary nature of the study
• why the study is being done
• who is doing the study
• the procedures, activities, tests, or treatments involved (including how long they will take, how often they have to be completed, and whether there are any other treatment options available rather than being in the study)
• potential risks, discomforts, or side effects
• potential benefits to participating, if any
• how your privacy will be protected
• how long your participation will last
• what will happen if you are injured while participating
• the costs to you, if any
• what to do if you change your mind about participating
• whom to contact with questions, concerns, or problems

Each study is different, so time requirements will vary. Some may require very little of your time, perhaps only 5–10 minutes, while others may require multiple visits over an extended period of time, sometimes up to several years. Your time commitment for a particular study will be described during the consent process.

informed consent

Informed consent is the process of telling interested individuals what is involved in taking part in a specific research study. Typically, this includes:

• reviewing written information
• giving the potential volunteer time to review this information while considering participation (taking it home to review with friends or family, if desired)
• discussing the information verbally
• answering any questions

Once all of the information is provided to you and your questions are answered, you will then be asked to decide whether or not to take part in the study.

All decisions are voluntary, and you must provide your agreement (i.e., consent) before any study activities can begin. Usually, this involves signing a consent form. Although, for some studies, verbally agreeing to participate may be sufficient.

Once you provide consent to be in the study, you will continue to receive important information about your participation throughout the study.

It’s important to understand what is involved in taking part in a research study and to carefully consider what that means for you. Research can pose risks to your health, safety, and welfare, so it’s important to understand exactly what those risks are.

It’s also important to understand that taking part in research is voluntary. You make the decision about whether or not to participate, and if you agree to take part, you can always change your mind later.

State law determines who can provide consent. In New York State, only individuals 18 years of age and older can provide consent. Minors, based on their age and ability, are usually asked for their agreement to participate in research, but their parent or legal guardian must also provide their permission to participate. Other special considerations are also made when a minor is a ward of the state or adults are unable to make decisions for themselves.

If you have questions about who can or cannot provide consent, be sure to ask the study team.

The following key points are most important about informed consent:

• Being in a study is voluntary—it is your choice.
• If you join a study, you can change your mind and stop at any time.
• If you have questions about anything that is not clear to you, you can ask them at any point of time before, during, or after the study.
• If you feel you need more time or information to make an informed decision about whether or not to take part in the study, do not hesitate to ask for it.

Subject Protections

Research studies involving humans must be approved and monitored by an Institutional Review Board (IRB). An IRB is a committee of individuals responsible for reviewing research to ensure adequate protections are in place to protect the people who take part.

For each study reviewed, the IRB checks to see that:

• there is a good reason to conduct the study
• the risks related to participating are the least possible
• the risks related to participating are reasonable given the knowledge that will be gained from conducting the study
• the plan for selecting subjects to participate is fair
• subjects will be provided enough information about the study

Protecting the information you provide to researchers is a high priority, particularly if you provide health-related or sensitive information.

As part of the IRB approval process described above, all researchers must provide a plan to adequately protect the information they plan to collect in order for the study to be approved. This might include assigning a code to the information collected instead of using your name or other identifiable information and storing the information in a secure manner.

You are free to withdraw from a research study at any time, for any reason. Your relationship with the hospital, clinic, academic institution, or employer will not be affected and you will not lose any benefits to which you are entitled.

Note that in some cases, a researcher may decide to end your participation in the study early. This may happen if the study is no longer in your best interest, if you can no longer complete study activities, or if the study ends early for some other reason.

Additional participant resources

Downloadable information.

• Participating in Research Overview
• Informed Consent

External resources

• About Research Participation (Department of Health & Human Service)
• Children & Clinical Studies (National Heart, Lung & Blood Institute)
• Clinical Research Trials and You (National Institutes of Health)

University research studies

• Search UR Health Research
• Join the UR Health Research Volunteer Registry to be contacted for future studies
• Follow UR Health Research on Facebook
• CenterWatch Clinical Trials Search
• ClinicalTrials.gov
• National Institutes of Health List of Registries
• ResearchMatch

share your thoughts

Report an issue, concern, or complaint

If you have participated in University of Rochester research and would like to report an issue, concern or complaint about the research you, or a family member, has participated in, please do so via our feedback form.

Share your feedback

Participate in Studies

Help us further our discoveries of how the mind works

You do not have to be affiliated with Stanford University to participate in Psychology research. The majority of our paid studies take place on the Stanford campus, but we also offer opportunities to take part in our experiments online. We appreciate your participation, which is vital to the continued success of our department. Out of consideration for our researchers' time and resources, we ask that you please only sign up for studies you can attend and that you cancel any appointments you are unable to make.

Stanford students in Psychology classes can not receive course credit for participating in paid studies. Please check your course syllabus for participation instructions.

Sign up to participate

Existing participants can  log in  to browse our current studies and sign up for open timeslots.

Connect with us:

How to participate in a research study.

Different types of clinical studies are designed to investigate potential therapies, medications, and medical devices — and all of these must go through each phase of a clinical trial before they are approved. This means that volunteers who are willing to participate in research studies are essential to medical breakthroughs and the advancement of knowledge surrounding any given condition. 

Participating in a research study is a fantastic way to help future patients and gain access to potential new treatments, but it’s important to make sure you find a trial that’s the right fit for you. If you’re curious about how to find clinical trials, read on to learn more.

How to sign up for research studies

Use a clinical trial search tool.

A clinical trial search tool provides a streamlined way for individuals to quickly view all the trials they may be eligible for and narrow down their options. If you try to search for research studies and get a lot of results, here are a few ways to narrow down your options:

• Determine how far you’re willing to travel . Depending on your location, there may be trials in your neighborhood or a short distance away, but some trials may be farther. Determine how far you’d be willing to travel (keeping in mind that trials sometimes offer compensation for travel expenses ) or decide if a virtual clinical trial would be a better fit.
• Find trials that are specific to you. Different trials will have different requirements for participation, which is how researchers are able to figure out exactly what treatments work for what types of patients. When you use a tool like Antidote Match , you’ll be asked questions about your age, your medical history, and your diagnosis so you can quickly see which trials you may qualify for. 
• Take a look at important details. When reviewing the list of trials you may qualify for, you will be able to click on each one to view the important details such as what phase the trial is in, what it is investigating, who is sponsoring the research, and more. You will also be able to see the study’s inclusion and exclusion criteria to make sure you are actually eligible. 
• Learn about the logistics. In some study descriptions, you’ll be able to see the logistics of a trial such as if any overnight stays are required, if travel compensation is offered, and whether the study is using a placebo, which can all help inform the decision of whether or not the trial is a good fit.

Discuss the study with your doctor(s)

Before joining a clinical trial, it is important to talk with the relevant doctors to ensure it won’t interfere with your current treatment plan. Your doctor can help you think of questions to ask the research team , determine the potential risks and benefits of participation, and ultimately, help you make the best decision for your health.

Contact the researchers running the trial

Once you have a potential trial picked out, it is a good time to get in touch with the research team that is running the study. They will make inquiries to learn more about you and give you the opportunity to ask any outstanding questions you may have. If it sounds like a good fit after this conversation, they will invite you to the study site where you’ll undergo additional screening procedures if any are required.

Learn about informed consent

If it’s determined that you qualify for a study you want to participate in, you’ll be asked to sign an informed consent form before completing enrollment. This will detail the trial’s purpose, projected duration, general schedule, participant expectations, risks, and benefits. If you have questions about this process, the research team will help to walk you through it — and even after you sign the form, you can still exit the study at any time.

Ready to start searching for a clinical trial? Click the “Match me” button below to see a list of current opportunities.

Find my clinical trial match:

Get our latest blog posts in your inbox

Participating in Research

The Behavioral Lab (BeLab) studies human behavior and decision-making by inviting participants to participate in paid online or in-person studies and contribute to cutting-edge research. To participate in paid studies:

What Do These Studies Involve?

HBS researchers study a wide range of topics, including decision making, consumer preferences, group interactions, and economic behaviors. Studies typically involve completing surveys and tasks on a computer. Some studies involve small group interactions with other participants. ​More information on each study is listed in their descriptions on Sona .

To Participate, You Must Be:

Based in the United States

18 years of age or older

Able to show a valid photo ID (government or school issued)

Able to understand and speak English

Comfortable using a computer

Location & Directions

The BeLab is located on the 3rd floor of 2 Arrow St, Cambridge, MA 02138. It is a 5–7-minute walk from Harvard Square. The lab is close to Massachusetts Avenue and located near popular shops like Berryline yogurt, Kung Fu Tea, Boston Burger Company, and across the corner from Zinneken’s Belgian waffles. We are also next to Arrow Street Cleaner’s on Arrow Street.

By Public Transportation

The lab is about a 7-minute walk from the Harvard Station MBTA stop, that includes the Red Line and various bus lines. The lab is also one block away from the MBTA bus 1 stop at Mt. Auburn and Putnam.

Parking in Cambridge is limited and heavily regulated. When possible, we recommend that participants use public transportation. If you decide to drive to the BeLab, there are a few metered parking spaces on Mass Ave and Arrow Street and nearby paid parking garages.

• Department of Health and Human Services
• National Institutes of Health

Participate in Clinical Studies

Patient Recruitment

Are Clinical Studies for You? (What are clinical studies? What are the costs? What are the benefits? More...)

Children & Clinical Research

• Children & Clinical Studies
• Kids in Research

Find Clinical Studies

• NIH Clinical Center and ResearchMatch  ( En Español )
• Search the Studies (Find any ongoing clinical trial at the Clinical Center)

Frequently Asked Questions About Clinical Studies

Information for Referring Physicians (Whom to contact, eligibility, length of stay)

Learn about Clinical Research

• Medline Plus
• NIH & Clinical Research

Patient Information (Welcome to Patients, Patient Services, Legal and Ethical Issues)

NOTE: PDF documents require the free Adobe Reader .

This page last updated on 05/17/2021

You are now leaving the NIH Clinical Center website.

This external link is provided for your convenience to offer additional information. The NIH Clinical Center is not responsible for the availability, content or accuracy of this external site.

The NIH Clinical Center does not endorse, authorize or guarantee the sponsors, information, products or services described or offered at this external site. You will be subject to the destination site’s privacy policy if you follow this link.

More information about the NIH Clinical Center Privacy and Disclaimer policy is available at https://www.cc.nih.gov/disclaimers.html

Transforming the understanding and treatment of mental illnesses.

Información en español

Celebrating 75 Years! Learn More >>

• Health Topics
• Brochures and Fact Sheets
• Help for Mental Illnesses
• Clinical Trials

Clinical Research Trials and You: Questions and Answers

• Download PDF
• Order a free hardcopy

What is a clinical trial?

A clinical trial is a research study that involves people like you. Researchers conduct clinical trials to find new or better ways to prevent, detect, or treat health conditions. Often, researchers want to find out if a new test, treatment, or preventive measure is safe and effective. Tests can include ways to screen for, diagnose, or prevent a disease or condition. Treatments and preventive measures can include medications, surgeries, medical devices, and behavioral therapies.

Clinical trials are important because they serve as the foundation for most medical advances. Without clinical trials, many of the medical treatments and cures we have today wouldn’t exist.

Why should I volunteer for a clinical trial?

People volunteer for clinical trials for many reasons. Some want to advance science or help doctors and researchers learn more about disease and improve health care. Others, such as those with an illness, may join to try new or advanced treatments that aren’t widely available.

Whatever your reason for joining a clinical trial, researchers generally need two types of volunteers: those without specific illnesses or conditions and those with them.  

A healthy volunteer is someone in a clinical trial with no known related health problems. Researchers need healthy volunteers to establish a healthy or optimal reference point. They use data from healthy volunteers to test new treatments or interventions, not to provide direct benefit to participants.

A patient volunteer is someone in a clinical trial who has the condition being studied. Researchers need patient volunteers to learn if new tests, treatments, or preventive measures are safe and effective. Not all trial participants will receive experimental medications or treatments; sometimes, participants may receive a placebo. Researchers need to vary medications and treatments so they can compare results and learn from their differences.

While a study’s treatment or findings may help patients directly, sometimes participants will receive no direct benefit. However, in many cases, study results can still serve as building blocks that are used to help people later.

What would I experience during a clinical trial?

During a clinical trial, the study team will track your health. Participating in a clinical trial may take more time than standard treatment, and you may have more tests and treatments than you would if you weren’t in a clinical trial. The study team also may ask you to keep a log of symptoms or other health measures, fill out forms about how you feel, or complete other tasks. You may need to travel or reside away from home to take part in a study.

What are the risks and benefits of my participation in a clinical trial?

Clinical trials can provide many benefits to participants and society. However, before volunteering for a clinical trial, you should talk with your health care provider and the study team about the risks and benefits.

Potential Risks

When weighing the risks of volunteering, you should consider:

• The likelihood of any harm occurring
• How much harm could result from your participation in the study

Researchers try to limit patient discomfort during clinical trials. However, in some cases, volunteers have complications that require medical attention. In rare cases, volunteers have died when participating in clinical trials.

Potential Benefits

The benefits of volunteering can include:

• Treatment with study medications that may not be available elsewhere
• Care from health care professionals who are familiar with the most advanced treatments available
• The opportunity to learn more about an illness and how to manage it
• Playing an active role in your health care
• Helping others by contributing to medical research

Where can I find a mental health clinical trial?

The National Institute of Mental Health (NIMH) is the lead federal agency for research on mental disorders. While NIMH supports research around the world, it also conducts many clinical trials at the National Institutes of Health (NIH) campus in Bethesda, Maryland.

To learn more about NIMH studies conducted on the NIH campus, visit  NIMH's Join a Study webpage . These studies enroll volunteers from the local area and across the nation. In some cases, participants receive free study-related evaluations, treatment, and transportation to NIH.

To learn more about NIMH-funded clinical trials at universities, medical centers, and other institutions, visit  NIMH's clinical trials webpage .

What is the next step after I find a clinical trial?

To learn more about a specific clinical trial, contact the study coordinator. You can usually find this contact information in the trial’s description.

If you decide to join a clinical trial, let your health care provider know. They may want to talk to the study team to coordinate your care and ensure the trial is safe for you. Find tips to help prepare for and get the most out of your visit .

How do I know if I can join a clinical trial?

People of all ages, ethnicities, and racial backgrounds can volunteer for clinical trials. If you want to join a clinical trial, you must be eligible to participate in that specific trial. Your eligibility can usually be determined by phone or online screening.

All clinical trials have eligibility guidelines called inclusion and exclusion criteria. These criteria may include:

• The type and stage of an illness
• Treatment history
• Other medical conditions

Researchers use these guidelines to find suitable study participants, maximize participant safety, and ensure trial data are accurate.

What kinds of questions should I ask the study team before deciding if I want to take part in a clinical trial?

It can be helpful to write down any questions or concerns you have. When you speak with the study team, you may want to take notes or ask to record the conversation. Bringing a supportive friend or family member may also be helpful.

The following topics may give you some ideas for questions to ask:

• The study’s purpose and duration
• The possible risks and benefits
• Your participation and care
• Personal and cost concerns

For a list of specific questions, check out Questions to Ask About Volunteering for a Research Study  from the U.S. Department of Health and Human Services’ Office for Human Research Protections.

How is my safety protected if I choose to take part in a clinical trial?

Strict rules and laws help protect participants in research studies, and the study team must follow these rules to conduct research. Below are some measures that can help ensure your safety.  

Ethical Guidelines

Ethical guidelines protect volunteers and ensure a study’s scientific integrity. Regulators created these guidelines primarily in response to past research errors and misconduct. Federal policies and regulations require that researchers conducting clinical trials obey these ethical guidelines.

Informed Consent

Before joining a trial, you should understand what your participation will involve. The study team will provide an informed consent document with detailed information about the study. The document will include details about the length of the trial, required visits, medications, and medical procedures. It will also explain the expected outcomes, potential benefits, possible risks, and other trial details. The study team will review the informed consent document with you and answer any questions you have. You can decide then or later if you want to take part in the trial.

If you choose to join the trial, you will be asked to sign the informed consent document. This document is not a contract; it verifies you understand the study and describes what your participation will include and how your data will be used. Your consent in a clinical trial is ongoing and your participation is voluntary. You may stop participating at any time.

Institutional Review Board Review

Institutional review boards (IRBs) review and monitor most clinical trials in the United States. An IRB works to protect the rights, welfare, and privacy of human subjects. An IRB usually includes a team of independent doctors, scientists, and community members. The IRB’s job is to review potential studies, weigh the risks and benefits of studies, and ensure that studies are safe and ethical.

If you’re thinking about volunteering for a clinical trial, ask if an IRB reviewed the trial.

What happens when a clinical trial ends?

When a clinical trial ends, researchers will analyze the data to help them determine the results. After reviewing the findings, researchers often submit them to scientific journals for others to review and build on.

Before your participation ends, the study team should tell you if and how you’ll receive the results. If this process is unclear, be sure to ask about it.

Where can I find more information?

This fact sheet covers the basics of clinical trials. To find more details and resources, visit  NIMH's clinical trials webpage .

For More Information

MedlinePlus  (National Library of Medicine) ( en español  )

ClinicalTrials.gov  ( en español  )

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES National Institutes of Health NIH Publication No. 23-MH-4379 Revised 2023

The information in this publication is in the public domain and may be reused or copied without permission. However, you may not reuse or copy images. Please cite the National Institute of Mental Health as the source. Read our copyright policy to learn more about our guidelines for reusing NIMH content.

• Open access
• Published: 02 August 2024

The impact of a curriculum-based research training program on medical students’ research productivity and future research interests: a longitudinal study

• Jing Shen 1 ,
• Hongyan Qi 1 ,
• Guiling Liu 1 ,
• Xuyun Li 2 &
• Yu Fang 2  

BMC Medical Education volume  24 , Article number:  836 ( 2024 ) Cite this article

163 Accesses

Metrics details

Incorporating scientific research into undergraduate medical education is necessary for the quality of future health care. However, providing rigorous research training to a large number of medical students at one institution remains one of the major challenges. The authors studied the impact of a curriculum-based Research Training Program (RTP) for all undergraduate students at Zhejiang University School of Medicine (ZUSM) on research productivity and future research interests.

Medical students ( n  = 2,213) from ZUSM who completed the course of RTP between 2013 and 2020 were studied. The authors measured the academic performance, research publications, and research projects of students across years, and evaluated potential factors that contribute to student research productivity and increased interest in future research.

Across the years, there was an increase in the number of student publications, a greater proportion of students with publications, and a greater proportion of projects involving three or more students ( P  < .01 for all). The academic performance of the course was associated with increased publications ( P  = .014), whereas overall satisfaction of the course (OR 2.07, 95% CI [1.39, 3.10], P  < .001), Skill Composite Score (SCS) (OR 1.70, 95% CI [1.16, 2.50], P  = .007), and male gender (OR 1.50, 95% CI [1.06, 2.12], P  = .022) were associated with increased future research interests.

Conclusions

The findings suggest that the curriculum-based RTP improved students’ research productivity, and that overall program satisfaction and self-assessed performance were associated with increased students’ intent to participate in future research.

Peer Review reports

Introduction

Scholarly research training programs provide medical students with the opportunity to develop skills related to critically evaluating medical information, communicating and disseminating research findings, and contributing to the new discovery and innovation of medical knowledge [ 1 , 2 , 3 ]. These research experiences can foster evidence-based medical practice and bench-to-bedside translational research driven by physician-scientists [ 4 , 5 ]. In order to support medical students in improving the research skills they will need in their future careers, a growing number of medical schools have incorporated research programs as core curriculum components in real research environments, either as mandatory, elective, or extracurricular activities [ 6 , 7 , 8 , 9 , 10 , 11 ].

Studies of research programs have employed various metrics to evaluate their effectiveness across different educational settings. Reviews of these initiatives indicate that involvement in structured research significantly boosts students’ publication outputs and enhances their engagement in future research, with successful programs reporting higher academic productivity and a greater inclination towards research-oriented careers [ 1 , 8 , 9 ]. For instance, in the USA, programs at Duke University School of Medicine and Stanford University School of Medicine have long embedded rigorous scholarly activities into the curriculum, fostering advanced research skills and leadership qualities [ 6 ]. Similarly, Johns Hopkins has demonstrated increased research productivity through scholarly projects, as evidenced by publications and conference participation [ 12 ]. The University of Pittsburgh’s initiative has cultivated critical analytical skills, leading to robust academic outcomes [ 13 ]. In the UK, research programs have been identified as a pivotal component of medical education, significantly enhancing student research skills and providing robust platforms for developing research-intensive careers [ 14 , 15 ]. Meanwhile, in Sweden, a mandatory research course has positively influenced students’ subsequent academic careers, encouraging many towards PhD studies and demonstrating the enduring impact of such programs [ 16 ].

However, despite the global adoption of research programs, students frequently encounter barriers such as insufficient time, inadequate support for basic research concepts from the curriculum, and a lack of acknowledgment and mentorship. These issues are common across both developed and developing countries [ 8 , 10 , 15 , 17 ]. In developing regions, in particular, these challenges are compounded by the large number of students with no prior research experience and relatively insufficient teaching resources [ 8 , 10 , 17 , 18 ].

On the need for evidence-based medicine and the increased demand for physician-scientists, medical schools in China have designed research courses and programs to encourage students to engage in research training [ 19 , 20 ]. Currently, there were three types of educational programs in China’s medical education system according to the duration of studies, 5-year programs (Bachelor), ‘5 + 3’ integrated programs (Master), and 8-year Medical Doctor (MD) programs. Among them, the first two programs account for more than 98% matriculates each year, while only about 2% students come from the MD programs. Nevertheless, unlike 8-year programs that typically have intensive training programs, such as more advanced biomedical courses, systematic training in academic skills, and early assignment of research mentors, 5-year or ‘5 + 3’ integrated programs occasionally have immersive research training due to a large number of students [ 19 , 21 ]. The 2019 China Medical Student Survey (CMSS), which collected data from 33 medical schools in China, showed that more than half of students in 5-year programs had never participated in research activities, compared with only one in 10 students in 8-year programs [ 20 ]. The latest survey, which collected 113 medical schools in China in 2022, showed that the percentage is rising further ( https://medu.bjmu.edu.cn ), suggesting an urgent need for change.

As one of the leading medical schools in China, Zhejiang University School of Medicine (ZUSM) provides medical education for 5-year, ‘5 + 3’, and 8-year programs. In 1998, ZUSM established a curriculum-based Research Training Program (RTP) specifically for 5-year and ‘5 + 3’ program students, laying the groundwork for subsequent research training in the 8-year program [ 22 ]. Central to the RTP is the Stepwise Medical Student Research Training (SMSRT) course, which has utilized flipped classroom teaching since 2016. This course integrates basic medical experiments and independent research projects for 3rd-year students, emphasizing the development of critical research skills such as question formulation, data collection, rigorous analysis, and effective communication within a team setting. Following the mandatory SMSRT course, students can apply for a variety of elective longitudinal research programs that often lead to scholarly dissemination, such as peer-reviewed publications and presentations at regional or national meetings.

To date, ZUSM is one of the few medical institutions in China that offers intensive and rigorous research training for all medical undergraduates. Our curriculum-based research program combines the compulsory course and elective projects, which not only ensure formalized research experiences for a large number of students but also provide flexible in-depth research opportunities for students who are interested in research. The primary focus of this study is to explore the specific learning outcomes related to students’ research productivity and their future research interests. These outcomes align with the core objectives of the RTP, which aims to enhance the research capabilities and scholarly engagement of students. While other potential impacts such as research collaborations and clinical applications are also important, they fall beyond the main scope of this study. To guide our analysis, the research questions we aim to answer are: (1) How does participation in the RTP influence the research productivity of medical students? (2) What effect does participation in the RTP have on students’ future research interests?

Research training program at ZUSM

RTP at ZUSM is a required component of the Bachelor of Medicine (BM) curriculum. It consists of a compulsory laboratory course (SMSRT) and an elective research project module (Fig.  1 ). As the core of the program, the SMSRT process occupies 128 curricular hours over a period of approximately 4 months for 3rd-year medical students. The first portion of this process was mainly designed using inquiry-based laboratory exercises each week to allow the students to practice for the upcoming independent project [ 23 ]. Students worked in small groups of three to complete the experiment, and 10 groups formed a class. After learning the foundations of medical research (principles of research design and methodology, basic statistics, research ethics, etc.) in the first week, students were required to complete four practical blocks (neurology and skeletal muscle, circulation, respiration, and urology), with 2 to 3 inquiry-based and problem-driven experiments in each block, ranging from basic experiments to comprehensive experiments. This series of weekly laboratory experiments expose students to the scientific research process, including method choosing, data collecting, statistical reasoning, and also professional skills, such as teamwork.

Flow chart of the RTP structure at ZUSM

The latter half of the SMSRT process involved each class designing and implementing an independent novel research project under the direct supervision of a faculty mentor. As early as Week 2, students received lectures, discussion times, and readings about research skills. Each group in the class was asked to propose a research question and present a project proposal in Week 6. The research projects were typically hypothesis-driven, budget limited (15,000 to 20,000 CNY per class), and may include a variety of disciplines such as basic science, translational, and public health research. The class then voted for the most feasible research project, and students were required to design their own step-by-step research protocol together. The following five weeks (weeks 11–15) of class time are devoted entirely to the project, and students can also conduct data collection and analysis outside the normal class time limits. In the last week of the course, each student completed a formal thesis and orally presented their findings in groups. During the process of the project, the research mentor provided oral and written feedback to students on each individual or group assignment (project proposal, progress report, thesis, and oral presentation). Students were encouraged to present at conferences or prepare manuscripts for peer-reviewed journals, however, these were not mandatory requirements of the course.

After completing the course, RTP offers a variety of ways for students to further enrich their research experience: they may consider continuing their research projects with their course mentor or apply for the Student Research Training Program (SRTP) founded by Zhejiang University, or the provincial and national Undergraduate Training Program for Innovation and Entrepreneurship (UTPIE). These elective programs usually accept longitudinal projects that required ongoing participation by the student and include procedures such as mid-term examination, final defense, and comprehensive assessments.

Study population and data collection

This cross-sectional observational study analyzed data from medical students who completed the SMSRT course of the RTP between September 2013 and January 2021. We included 2,213 students from both the 5-year and ‘5 + 3’ programs in clinical medicine. Students enrolled in these programs undergo identical educational experiences during their first five years, participating in the same courses, adhering to the same academic standards, and fulfilling identical curriculum requirements. Eight-year MD program students were excluded.

In determining the metrics for evaluating the effectiveness of the RTP, we considered both international benchmarks and local educational objectives. The selection included metrics such as the number of publications in peer-reviewed journals and self-reported research interests, commonly utilized in medical education research to gauge scholarly productivity and student engagement [ 1 , 9 , 12 , 16 , 24 ]. In addition to these, we included academic metrics unique to our program, such as the Skill Composite Score (SCS) from course surveys and academic performance in the SMSRT course. These metrics were chosen to directly assess the RTP’s impact on students’ skills and academic success, aligning with our institution’s goal of developing well-rounded medical professionals.

Program staff extracted data from the students’ academic records and the RTP program’s records. We gathered demographic data, including gender and grade point average (GPA) of students before they entered the SMSRT. The ZUSM undergraduate education office provided detailed information regarding the numbers of projects and team composition for students who participated in the SRTP and UTPIE programs. Scholarly productivity was measured based on the number of publications in peer-reviewed journals; this involved querying PubMed, EMBASE, and the China National Knowledge Infrastructure (CNKI) databases using students’ names and our institution’s name as search terms. To mitigate issues of name ambiguity, we compared the corresponding authors listed in the publications to faculty members at our institution. Additionally, we contacted faculty members directly to confirm the accuracy of the student authorship when ambiguities arose. We included articles published by students from July of their third year to July two years after graduation. It is important to note that abstracts presented at conferences or other scholarly meetings were not considered as publications. Only peer-reviewed articles in journals were counted as formal publications for the purposes of this research. However, at the time of analysis, published data from the Classes of 2017 and 2018 (completed the SMSRT course in 2019 and 2020) were thought to be too incomplete to be included in this part of our study. Additionally, students’ self-reported data were collected via course surveys conducted at the end of the SMSRT in 2017 and 2018. The two surveys were selected for the following reasons: our first cohort using the survey described in this study completed the course in 2017, and students’ publication data after 2019 are still incomplete. To ensure timely participation, students were reminded via campus text messages to submit their surveys. We also maintain a repository of email addresses for all participating students, which is accessed only with the course director’s permission and in compliance with privacy regulations. All data were de-identified before analysis, and the study received approval from the Ethics Committee of Zhejiang University School of Medicine (IRB 2023-002).

Variable description and outcome measurement

In our study, we defined and measured seven primary outcomes based on Kirkpatrick’s levels, ranging from satisfaction to behavioral change [ 1 ]. At the Reaction level, we evaluated students’ overall satisfaction with the SMSRT course and their research mentors through a course survey, asking them to rate their satisfaction on a 5-point scale (5 = very satisfied, 4 = satisfied, 3 = neutral, 2 = not satisfied, 1 = not at all satisfied). At the Learning level, we measured students’ academic metrics, which included the self-reported SCS in the course survey and academic performance in the SMSRT course. The SCS was generated for each student by summing the 5-point scale responses (5 = excellent, 4 = good, 3 = fair, 2 = poor, 1 = very poor) from five scores: develop a research question, critical appraisal of the medical literature, choose an appropriate research design, perform experiments correctly, and writing a scientific manuscript. Due to its non-normal distribution, the SCS was dichotomized at the median. Academic performance was divided into five groups (excellent = 90 and above, good = 80 to 89, average = 70 to 79, fair = 60 to 69, and poor = below 60). At the Behavior level, we defined scholarly productivity by the number of publications in peer-reviewed journals and assessed the application of longitudinal research projects and scholarly productivity throughout the RTP process. Additionally, to gauge changes in research interest, we asked students in the course survey, ‘How has your interest in future research or academic work changed since your research training?’. Students responded on a 5-point scale: 5 = increased a lot, 4 = increased, 3 = unchanged, 2 = decreased, 1 = decreased a lot.

Data analysis

We used descriptive statistics to summarize students’ demographic characteristics as well as program outcomes. For academic performance, research publications (numbers and proportions), and team composition of research projects, we assessed differences across years by the Kruskal-Wallis test, or by the linear-by-linear test of trend when an ordinal relationship seemed plausible for the temporal trends across years. Bonferroni correction was used for multiple analyses.

We divided students into two subgroups based on student publications or future research interests. The number of publications for each student was treated as a continuous variable. We then transformed it into dichotomous variables, comparing at least one publication with no publications. Students’ future research interests were also transformed into a dichotomous variable, comparing high interest (increased a lot or increased) with low interest (unchanged, decreased, or decreased a lot). We investigated associations between the factors of interest (overall satisfaction, SCS, academic performance, and gender) and the publications or future research interests, and between various factors of interest, using Spearman rank correlation, Mann-Whitney U test, chi-square test, and nonparametric test of trend as appropriate. We further used logistic regression to describe the association of overall satisfaction, SCS, and gender with future research interests. All data analysis was performed using SPSS 26.0 (IBM Corp., Armonk, New York) with P  < .05 defined as statistically significant.

Demographics and academic characteristics

In total, 2,213 students completed the SMSRT course of RTP between 2013 and 2020. Table  1 presents the summary statistics on the demographic and academic characteristics of students. Of the 2,213 students, 1093 (49.4%) were female and 1120 (50.6%) were male. For academic variables, the mean and SD of the GPA before entering the SMSPT was 3.48 ± 0.65. Prior to RTP, these students had similar demographics and baseline academic aptitudes.

Academic performance, research publications, and research projects across years

Table  2 summarizes students’ academic performance in SMSRT, research publications, and research projects from 2013 to 2020. Although the academic performance of students varied significantly across the years, there was no ordinal relationship that seemed plausible for the temporal trends. For research publications, the number of publications for each student was significantly different across years ( P  < .001), with pairwise comparisons indicating a significantly higher number of publications in both 2017 and 2018 compared with 2013, 2014, and 2015 (Bonferroni adjusted P value for all comparisons < 0.05). Similarly, the proportion of students with any publication increased across years ( P  = .002). However, there were no differences in the proportion of students with first authorship between years ( P  = .320). For longitudinal research projects in the RTP process, since the number of projects each year is determined by the program organizer, we mainly analyzed the study field and team composition of the project. The majority of the students (75.0-90.8%) selected basic science, and only a few chose clinical/translational research (7.4–18.6%), public health (1.5–11.9%), and medical education (about 1.5%) (Supplementary Table 1 ). While there was little variation in the number of projects between years, there was a significant increase in projects involving three or more students ( P  < .001) (Table  2 ).

Effects on student publications or future research interests

In 2017 and 2018, 584 students returned the course survey at the end of SMSRT corresponding to a response rate of 89.7%. Most students were either satisfied (305; 52.2%) or very satisfied (210; 36.0%) with the course (very satisfied = 5, not at all satisfied = 1; Median 4, 95% CI [ 4 ]). Most students were either satisfied (222; 38.0%) or very satisfied (346; 59.2%) with their project mentor (very satisfied = 5, not at all satisfied = 1; Median 5, 95% CI [ 5 ]). Totally 305 (52.2%) students had high SCS, and 279 (47.8%) students had low SCS. Descriptive statistics for the five constituent scores of SCS are provided in Supplementary Table 2 .

Table  3 describes the relationship between various factors of interest (overall satisfaction, SCS, academic performance, and gender) and the publications or future research interests. Supplementary Table 3 shows associations between factor variables. For student publications, it was only correlated with the academic performance of SMSRT ( P  = .014). Whereas for students’ future research interests, three factors (overall satisfaction of the course, SCS, and gender) showed significant correlation or difference. We further conducted logistic regression and included these factors in the analysis model (Table  4 ). Our results showed that the more satisfied students were with the SMSRT course (OR 2.07, 95% CI [1.39, 3.10]), the higher the SCS score (OR 1.70, 95% CI [1.16, 2.50]), or male gender (OR 1.50, 95% CI [1.06, 2.12]), the more likely they were to be interested in future research.

Reflecting on our research questions, this study at ZUSM provides insights into how structured research training programs like the RTP significantly influence medical students’ research productivity and their future research interests. Our longitudinal data showed an increase in the number of student publications, a greater proportion of students with publications, and a greater proportion of projects involving three or more students across years, especially after the flipped teaching-based curricular reform in 2016. We also tracked Kirkpatrick’s educational outcome variables at various levels, from satisfaction to behavioral change, to particularly highlight how the RTP influences student publications and their future research interests. The academic performance of the SMSRT process was associated with increased publications, whereas overall satisfaction of the course, SCS, and male gender were associated with increased interest in future research.

Among the student outcomes that research programs usually measure, peer-reviewed journal publications are generally considered as an indicator of research productivity, reflecting students’ ability to apply acquired knowledge and skills to a career setting [ 1 , 25 ]. It has been reported that the publication rate of students who had participated in scholarly programs varies greatly. For example, earlier reports showed that 8–85% of the medical students had published at least one paper after their research period [ 1 ]. An international cohort study found that 8.9–75.7% medical students from six different countries had articles accepted or published in journals [ 17 ]. In contrast to the relatively high proportion of students in many western countries who have participated in scientific research activities before scholarly research programs, most Chinese students have no prior research experience before enrollment. This makes formal and rigorous research training particularly important for medical students in China. With the help of RTP in ZUSM, the proportion of students with publication reached to 26.7%. Furthermore, the number of peer-reviewed manuscripts published by ZUSM students increased across the years, which is higher than the average level of medical schools in China according to the national CMSS survey in 2022 (0.42 of ZUSM vs. 0.17 of CMSS) ( https://medu.bjmu.edu.cn ).

We believe that several factors have influenced the increase in research productivity over the decade at ZUSM. First, compared to more than half of students in 5-year programs who had never participated in research activities in medical schools in China [ 20 ], ZUSM provides all students with the opportunity to perform research in the SMSRT process, and more than 60% of students also participate in longitudinal research programs during the rest of the RTP. Also, we adopt inquiry-based and problem-driven laboratory exercises in SMSRT since 2016, which have been demonstrated to allow students to practice the scientific process and develop key competencies of scientific research [ 26 , 27 ]. Through the stepwise procedure, students could be well prepared for the latter independent novel research project in SMSRT, then finally the authentic longitudinal programs in RTP. ZUSM also has a group of faculty who now have more experience working with medical students on the RTP and may be more effective in mentoring students in the program. Lastly, ZUSM is one of the top research-focused medical schools in China and may attract students who are more interested in research upon matriculation. However, since the intended outcomes of our RTP are mainly focused on the research process and methodology itself, that could be a hindering factor to student publication frequency. Starting with the class of 2019, ZUSM requires all medical students to complete an academic paper before graduation, which may bolster the number of student publications.

We also analyzed students’ application of elective longitudinal research projects in the RTP process and found a significant increase in projects involving three or more students. It should be noted that in addition to research-specific skills, interpersonal skills, such as teamwork and communication skills, are also considered important core competencies for medical practitioners [ 14 ]. An essential feature of our curriculum-based research program is the cultivation of teamwork. Because of the multifaceted nature of the SMSRT project, students must work together to complete every part of the project from design to presentation, therefore helping them develop desirable skills in a collaborative environment. Another finding was that most students in this study preferred basic science investigation over other research fields (e.g. clinical/translational research, public health, and medical education). It has been reported that translational and clinical research experiences have become increasingly attractive alternatives for many medical students [ 6 ]. Whether our findings are the real choice of ZUSM medical students or due to the imbalance of relevant resources in RTP (e.g. shortage of clinical mentors) warrants further study.

When exploring the potential factors that contribute to the student publication, only the academic performance of the SMSRT process was associated with increased publications. This finding is consistent with the national CMSS survey analysis that medical students with better academic performance in China are more likely to engage in research, which may lead to more learning outcomes [ 20 ]. On the other hand, it has been reported that medical school research experience was associated with increased interest in research or academic activities after completion of training [ 1 , 12 , 24 ]. In the present study, we found that specific variables including overall satisfaction of the course, self-reported skill scores, and gender may lead to this increased interest. Among these variables, previous studies have shown that program satisfaction is associated with increased intent to pursue career-long research, with two of the potential contributors being quality mentorship and improved student research self-efficacy [ 12 , 24 ]. The supervisors’ experience and availability to students are often considered as key factors of student career paths and interest in academic medicine [ 28 ]. The support from supervisors (or mentors) is expected to include practical guidance, supervision, and feedback designed to promote deeper understanding and the development of autonomy. Further understanding of factors influencing mentor satisfaction, including project success, the mentor’s experience and practice, and the specific skills taught by the mentor, may enhance understanding of the mentor’s contribution to overall satisfaction. For another potential contributor, student research self-efficacy, we collected students’ self-assessed performance in the five core competencies of the course (i.e. SCS) and identified a positive correlation between SCS and future research interests. Self-efficacy refers to a person’s belief in their ability to achieve a certain goal [ 29 ]. Participation in research projects has been shown to improve research self-efficacy among medical students [ 12 , 30 ]. Accordingly, a systematic review examined the perceptions of medical students regarding research revealed that students who lacked the relevant research skills may result in low motivation and a lack of self-efficacy [ 10 ].

Regarding gender disparity, we found a significant difference in future research interests between male and female students. More male students expressed interest in research participation in the future. Interestingly, several studies have shown that women’s self-efficacy and interests tend to be lower in research fields as compared to men [ 31 , 32 , 33 ]. The national CMSS survey analysis also shows that male medical students in China benefit more concerning the Science and Scholarship domain of learning outcomes [ 20 ]. However, considering that the other two factors identified in this study (overall satisfaction and skill scores) that were associated with increased research interests remained the same between men and women, the reasons behind this phenomenon need further investigations in future studies.

Transitioning from the internal dynamics of the RTP, it is important to address how such programs can be adapted to institutions with varying resources. Our experience suggests that structured, inquiry-based laboratory exercises and an emphasis on mentorship form the core of RTP’s success. For resource-constrained settings, prioritizing digital tools and collaborative platforms could mitigate some of the physical resource requirements, enhancing the program’s scalability and adaptability. Furthermore, innovative solutions like the flipped classroom model and peer mentorship have proven effective in our setting to maximize resource utilization and tackle common challenges such as mentor scarcity and time constraints. These strategies could potentially be adapted to different educational environments, offering a versatile framework for enhancing research training globally.

To further evaluate the relevance and applicability of our findings on a global scale, it is instructive to consider similar research training programs internationally. Medical schools in countries such as the United States and Europe often feature extensive research training tracks, which may include dual-degree programs like MD-PhD, reflecting a robust integration of research into medical education [ 6 , 15 ]. These programs are designed not only to enhance research skills but also to promote a seamless transition into academic medicine. Comparing the RTP at ZUSM with these international models highlights significant structural and resource-related differences but also underscores common objectives in enhancing research competencies [ 8 , 9 ]. Despite varying resources, ZUSM has demonstrated that structured programs can significantly boost research outputs and engage students effectively, serving as a potential model for similar institutions facing resource constraints. Such international comparisons not only affirm the universality of enhancing medical student research capabilities but also pave the way for collaborative adaptations that could be beneficial across different educational systems and resource settings.

Limitations

One limitation of the current study is that we conducted it at a single institution in China that is research-oriented and where many students wish to pursue subspecialties and academic careers. Therefore, our results might differ from those of other medical schools in China with more limited research and academic goals. In addition, this study does not encompass long-term outcomes such as impacts on participants’ choices of clinical specialty or direct improvements in patient health, which are crucial aspects within the Results level of Kirkpatrick’s model as outlined by Bierer S.B. et al. [ 1 ]. The absence of comprehensive post-training data restricts our ability to evaluate these advanced impacts. Recognizing this limitation, future research should aim to gather longitudinal data that can assess the enduring effects of the RTP on academic medicine careers, clinical practice improvements, and broader organizational or societal contributions. Such follow-up studies might include analyses of sustained research engagement, publications post-graduation, and academic appointments obtained after residency training. Besides, as a required course, we do not have data on students who have not completed the RTP program. Lastly, the survey used in this study included graduates from only two grades and the question of future research interests was only queried post-program which might introduce recall bias. More students and changes in research interest from pre-program to post-program should be included in further studies.

This study provides evidence of the learning outcomes of the curriculum-based RTP at ZUSM. The proportion of students with peer-reviewed publications has consistently increased over the years, clearly demonstrating an improvement in students’ research productivity, a primary focus of our research questions. Moreover, findings indicate that program satisfaction and students’ self-assessed performance are positively associated with increased intent to participate in future research, underscoring the RTP’s role in fostering long-term research engagement among students. Overall, the curriculum-based RTP offers rigorous and authentic research experiences for a large number of students, and can serve as a model for other medical schools interested in developing similar programs to bolster the physician-scientist workforce.

Data availability

Datasets that support the conclusions of this study are included in the article. Additional data at the individual student level are not publicly available because of potential risks to student privacy, but are available from the corresponding author on reasonable request.

Abbreviations

Research training program

Stepwise medical student research training

Student research training program

Undergraduate training program for innovation and entrepreneurship

Skill composite score

Bierer SB, Chen HC. How to measure success: the impact of scholarly concentrations on students–a literature review. Acad Med. 2010;85(3):438–52.

Article   Google Scholar  

Green EP, Borkan JM, Pross SH, Adler SR, Nothnagle M, Parsonnet J, Gruppuso PA. Encouraging scholarship: medical school programs to promote student inquiry beyond the traditional medical curriculum. Acad Med. 2010;85(3):409–18.

Cornett M, Palermo C, Wallace MJ, Diug B, Ward B. A realist review of scholarly experiences in medical education. Med Educ. 2021;55(2):159–66.

Butler D. Translational research: crossing the valley of death. Nature. 2008;453(7197):840–2.

DeFranco DB, Sowa G. The importance of basic science and research training for the next generation of physicians and physician scientists. Mol Endocrinol. 2014;28(12):1919–21.

Laskowitz DT, Drucker RP, Parsonnet J, Cross PC, Gesundheit N. Engaging students in dedicated research and scholarship during medical school: the long-term experiences at Duke and Stanford. Acad Med. 2010;85(3):419–28.

Boninger M, Troen P, Green E, Borkan J, Lance-Jones C, Humphrey A, Gruppuso P, Kant P, McGee J, Willochell M, et al. Implementation of a longitudinal mentored scholarly project: an approach at two medical schools. Acad Med. 2010;85(3):429–37.

Chang Y, Ramnanan CJ. A review of literature on medical students and scholarly research: experiences, attitudes, and outcomes. Acad Med. 2015;90(8):1162–73.

Havnaer AG, Chen AJ, Greenberg PB. Scholarly concentration programs and medical student research productivity: a systematic review. Perspect Med Educ. 2017;6(4):216–26.

Stone C, Dogbey GY, Klenzak S, Van Fossen K, Tan B, Brannan GD. Contemporary global perspectives of medical students on research during undergraduate medical education: a systematic literature review. Med Educ Online. 2018;23(1):1537430.

Cain L, Kramer G, Ferguson M. The Medical Student Summer Research Program at the University of Texas Medical Branch at Galveston: building research foundations. Med Educ Online. 2019;24(1):1581523.

DiBiase RM, Beach MC, Carrese JA, Haythornthwaite JA, Wheelan SJ, Atkinson MA, Geller G, Gebo KA, Greene JA, Sozio SM. A medical student scholarly concentrations program: scholarly self-efficacy and impact on future research activities. Med Educ Online. 2020;25(1):1786210.

Conroy MB, Shaffiey S, Jones S, Hackam DJ, Sowa G, Winger DG, Wang L, Boninger ML, Wagner AK, Levine AS. Scholarly Research Projects Benefit Medical Students’ Research Productivity and Residency Choice: outcomes from the University of Pittsburgh School of Medicine. Acad Med. 2018;93(11):1727–31.

Laidlaw A, Aiton J, Struthers J, Guild S. Developing research skills in medical students: AMEE Guide 69. Med Teach. 2012;34(9):e754–771.

Parameswaran G, Bowman A, Swales C, Ooi SZY, Chan SW, Babu PR, Ramsay D, Kostoudi S, Bandyopadhyay S. Collaborative SM-N-I. cross-sectional survey of Medical student perceptions of and desires for Research and Training pathways (SMART): an analysis of prospective cohort study of UK medical students. BMC Med Educ. 2023;23(1):964.

Moller R, Shoshan M. Medical students’ research productivity and career preferences; a 2-year prospective follow-up study. BMC Med Educ. 2017;17(1):51.

Ha TC, Ng S, Chen C, Yong SK, Koh GCH, Tan SB, Malhotra R, Altermatt F, Seim A, Biderman A, et al. Inclination towards research and the pursuit of a research career among medical students: an international cohort study. BMC Med Educ. 2018;18(1):86.

Siddaiah-Subramanya M, Singh H, Tiang KW. Research during medical school: is it particularly difficult in developing countries compared to developed countries? Adv Med Educ Pract. 2017;8:771–6.

Wang W. Medical education in China: progress in the past 70 years and a vision for the future. BMC Med Educ. 2021;21(1):453.

Zhang G, Wu H, Xie A, Cheng H. The association between medical student research engagement with learning outcomes. Med Educ Online. 2022;27(1):2100039.

Wan M, Liu S, Zhu J, Xiao S, Yuan L, Lei X, Lei H, Shi X, You W, Ruan G, et al. Challenges of senior 8-year-program medical students’ scientific research in China: a multicenter questionnaire-based study. Med (Baltim). 2022;101(10):e29026.

Lu Y, Li X, Ye Z, Wang M, Mei R, Xia Q. Study on new teaching mode of enhancing students’ capacity in independent study, independent experiment and independent innovation. Experimental Technol Manage. 2012;29(6):11–6.

Google Scholar  

Shen J, Qi H, Chen Y, Mei R, Sun C, Wang Z. Incorporating modified team-based learning into a flipped basic medical laboratory course: impact on student performance and perceptions. BMC Med Educ. 2022;22(1):608.

Wolfson RK, Alberson K, McGinty M, Schwanz K, Dickins K, Arora VM. The impact of a Scholarly Concentration Program on Student Interest in Career-Long Research: a longitudinal study. Acad Med. 2017;92(8):1196–203.

Amgad M, Man Kin Tsui M, Liptrott SJ, Shash E. Medical Student Research: an Integrated mixed-methods systematic review and Meta-analysis. PLoS ONE. 2015;10(6):e0127470.

Woodley SK, Freeman PE, Ricketts TD. Combining novel research and community-engaged learning in an undergraduate physiology laboratory course. Adv Physiol Educ. 2019;43(2):110–20.

Rennhack JP, VanRyn VS, Poteracki JM, Wehrwein EA. From proposal to poster: course-based undergraduate research experience in a physiology laboratory course. Adv Physiol Educ. 2020;44(3):459–63.

Moller R, Wallberg A, Shoshan M. Faculty perceptions of factors that indicate successful educational outcomes of medical students’ research projects: a focus group study. BMC Med Educ. 2021;21(1):519.

Bandura A, Barbaranelli C, Caprara GV, Pastorelli C. Self-efficacy beliefs as shapers of children’s aspirations and career trajectories. Child Dev. 2001;72(1):187–206.

Bierer SB, Prayson RA, Dannefer EF. Association of research self-efficacy with medical student career interests, specialization, and scholarship: a case study. Adv Health Sci Educ Theory Pract. 2015;20(2):339–54.

Bakken LL, Sheridan J, Carnes M. Gender differences among physician-scientists in self-assessed abilities to perform clinical research. Acad Med. 2003;78(12):1281–6.

Burgoyne LN, O’Flynn S, Boylan GB. Undergraduate medical research: the student perspective. Med Educ Online 2010;15.

Funston G, Piper RJ, Connell C, Foden P, Young AM, O’Neill P. Medical student perceptions of research and research-orientated careers: an international questionnaire study. Med Teach. 2016;38(10):1041–8.

Download references

Acknowledgements

The authors would like to thank the students at Zhejiang University School of Medicine for their engagement in this course. The authors would also like to acknowledge the faculty and staff of this course and the Undergraduate Education Office of Zhejiang University School of Medicine for their support. We further extend our gratitude to all who assisted in adhering to the STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) guidelines; the STROBE checklist is included as Additional File 3 to enhance the transparency and reporting of our study.

This work was supported by the Zhejiang Province “14th Five-Year” Teaching Reform Research Project (jg20220038); and the Zhejiang University School of Medicine High-level Education and Teaching Achievement Award Cultivation Project (cgyb20192001).

Author information

Authors and affiliations.

Department of Pathology and Pathophysiology, Zhejiang University School of Medicine, Hangzhou, 310058, China

Jing Shen, Hongyan Qi & Guiling Liu

Experimental Teaching Center of Basic Medicine, Zhejiang University School of Medicine, Hangzhou, 310058, China

Xuyun Li & Yu Fang

You can also search for this author in PubMed   Google Scholar

Contributions

JS contributed to the study design, data analysis, and drafting of the manuscript. JS, HQ and GL contributed to data collection, data analysis, and critical review of the manuscript. XL and YF contributed to data collection. All authors have read and approved the final manuscript.

Corresponding author

Correspondence to Jing Shen .

Ethics declarations

Ethics approval and consent to participate.

This study was approved by the Ethics Committee of Zhejiang University School of Medicine (IRB 2023-002). Informed consent was obtained from the participants prior to participation in this study. All procedures in this study was carried out in accordance with the Declaration of Helsinki.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary Material 1

Supplementary material 2, supplementary material 3, rights and permissions.

Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it.The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/ .

Reprints and permissions

About this article

Cite this article.

Shen, J., Qi, H., Liu, G. et al. The impact of a curriculum-based research training program on medical students’ research productivity and future research interests: a longitudinal study. BMC Med Educ 24 , 836 (2024). https://doi.org/10.1186/s12909-024-05841-0

Download citation

Received : 27 May 2023

Accepted : 30 July 2024

Published : 02 August 2024

DOI : https://doi.org/10.1186/s12909-024-05841-0

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Curriculum-based research program
• Research productivity
• Research interests
• Undergraduate medical education

BMC Medical Education

ISSN: 1472-6920

• Submission enquiries: [email protected]
• General enquiries: [email protected]

ORIGINAL RESEARCH article

The psychological effects of research participation on people with dementia: findings from a german exploratory interview study.

• 1 Department of Psychology, Psychological Aging Research, Faculty V: School of Life Sciences, University of Siegen, Siegen, Germany
• 2 German Center for Neurodegenerative Diseases (DZNE), Greifswald, Germany
• 3 Institute for Community Medicine, University of Greifswald, Greifswald, Germany

The German National Dementia Strategy aims to engage people with dementia in research projects. However, the effects of such research participation on experience and behavior have been insufficiently explored. This study aimed to investigate the psychological effect of research participation on people living with dementia. In a qualitative, exploratory approach, guideline-based interviews were conducted with four persons with dementia who had served as co-researchers on an advisory board in a health services research study for 8 months at that time. The analysis revealed predominantly positive effects of research participation at all levels of experience and behavior. Most effects were reported by the co-researchers on a cognitive level. Both the perception of being competent and of making a positive contribution to oneself and/or others are key effects of research participation. The main effects on an emotional level were joy and wellbeing and on a behavioral level were positive social contacts and social communication. Sadness and insecurity represent the sole negative effects. Nuanced focal points of effects among the individual interviews were found. The results align with existing research highlighting the positive effects of participation on people with dementia. Through advancing an interdisciplinary perspective on their research involvement, we advocate for heightened attention to this topic within the realm of psychology.

1 Introduction

Although the UN Convention on the Rights of Persons with Disabilities guarantees their right to equal participation and codetermination in political and social decision-making processes, people with dementia, as well as people with other forms of disability, still experience exclusion from decision-making, especially on issues that affect their own lives ( Hirschberg, 2010 ). Participation—in the broader sense understood as access to and involvement in activities, decisions and processes that affect the shaping of social conditions ( Arbeitskreis Kritische Gerontologie der DGGG, 2016 )—is a human right and a political and civic mandate ( Hirschberg, 2010 ). Persons living with dementia are too often denied the ability to make self-determined decisions about their medical treatment ( Wied et al., 2019 , 2021 ) or are excluded from considerations about their own care without the opportunity to address this exclusion ( Thraves, 2015 ). Furthermore, despite growing interest, they are still excluded from many areas of research and are rarely given the opportunity to participate in projects as co-researchers ( Rivett, 2017 ). However, when it comes to health research, there is a scientific approach in the form of participatory health research (PHR) ( Wright et al., 2016 , 2021 ) that aims to maximize participation for people whose areas of life or health problems are the subject of research. PHR specifically regards target groups as co-researchers who need to be involved in research processes as equal partners to generate relevant knowledge in the co-production process ( Wright et al., 2016 , 2021 ). This should lead to greater health equity ( Wright et al., 2016 , 2021 ). This is also reflected in the German National Dementia Strategy (NDS), which aims to “improve health services and the quality of life of people with dementia in line with their needs and requirements” through a variety of activities (p. 132) ( BMFSFJ, 2020 , p. 132). And Vinay and Biller-Andorno (2023) showed that most of the National Dementia Strategies they included in their evaluation contain patient empowerment as a key ethical aspect. An important field of action within the NDS is to open research in terms of content and methodology by involving persons with dementia in participatory research projects ( BMFSFJ, 2020 ).

Consistent with academic perspectives and scientific evidence, the involvement of people with lived experience is associated with a greater likelihood of positive research outcomes, increased likelihood of applicability and sustainable implementation of healthcare projects ( Di Lorito et al., 2017 ; Bethell et al., 2018 ; Gregory et al., 2018 ; Burton et al., 2019 ; Clar and Wright, 2020 ; Dening et al., 2020 ; Schlechter et al., 2021 ; Brooke, 2019 ; Tanner, 2012 ). Alongside the ethical and moral obligation and the instrumental benefit of involving those who are affected in research projects that concern their lives, another perspective on participation can also be adopted.

From a psychological perspective, participation is not only a means of enriching and improving research results through the personal experience of people with dementia. Rather, it can also positively influence the experience and behavior of the people involved. Qualitative studies have reported that they experience positive social relationships as part of their involvement in research projects; feel pride in meaningful activities; report intellectual stimulation, joy, feelings of appreciation, and meaning in life; feel dignity; and perceive their own lives as meaningful despite their illness ( Tanner, 2012 ; Ashcroft et al., 2016 ; Brooke, 2019 ; Dening et al., 2020 ). Participation is also already being used specifically as a means of promoting recovery due to its beneficial effects ( Ashcroft et al., 2016 ). Based on this, it could be assumed that by influencing a person's mental processes and states in a beneficial way, participation can be understood as a (psychological) intervention, defined as “the act of interfering with the outcome or course especially of a condition or process (as to prevent harm or improve functioning)” ( Merriam-Webster, (n.d.b) ). However, these findings usually appear to be embedded in other questions and tend to be more of a narrative nature. Furthermore, these publications often have methodological shortcomings, particularly regarding the description of the type and extent of participation and are rarely published in renowned journals ( Bethell et al., 2018 ).

There has been an increase in the literature on participatory methods in the field of dementia research, especially since 2019 ( Reyes et al., 2023 ), and a general increase in research activities in the field of participatory research. In the field of PHR, there are a few recent framework models that attempt to structure the potential impact dimensions of participation ( Staley, 2015 ; Banks et al., 2017 ; Kongats et al., 2018 ). Any form of research participation can be viewed as a complex intervention with various dimensions of impact, whereby the effects themselves are multifactorial, i.e., influenced, for example, by the project objectives, the commitment of the participants, the group dynamics, and the communication style ( Weidekamp-Maicher, 2021 ). Nevertheless, there is a lack of reliable findings on the question of the psychological effects in terms of benefits for persons with dementia ( Ashcroft et al., 2016 ; Bethell et al., 2018 ; Brooke, 2019 ). To the best of our knowledge, there are no empirical studies in which concrete psychological constructs have been specifically derived or systematically determined.

Therefore, in the current research we focus on the effects on the subjective experience of people with dementia. The aim is to gain a better understanding of the psychological effects and potential benefits of research participation for them. Specifically, the effects of participation will be investigated from a psychological background using an exploratory approach. In the context of the present work, it seems crucial to emphasize that people with dementia are a particularly vulnerable group in the context of research activities. Cognitive impairments, above all those affecting memory, the planning and control of actions, a limited ability to abstract and the loss of communication skills can cause methodological problems when conducting projects and research with people with dementia ( Slegers et al., 2015 ; Di Lorito et al., 2017 ). People with cognitive impairments may perceive their world and share their experiences differently, which can present challenges when carrying out projects together with them ( Slegers et al., 2015 ). Another limitation for their participation is the concern about their ability to give informed consent to research ( Swaffer, 2016 ). These challenges concern not only the research process itself, but also the resulting research findings, which may be affected. When investigating our research question, we try to take these challenges into account.

2 Materials and methods

2.1 study design.

The analysis of the psychological effects of participation follows a qualitative, exploratory design using semi-structured, guideline-supported interviews. The reporting of the methods applied in this study is aligned with the Consolidated Criteria for Reporting Qualitative Research (COREQ) ( Tong et al., 2007 ) and the Standards for Reporting Qualitative Research (SRQR) ( O'Brien et al., 2014 ).

2.2 The participatory research project as a framework

In cooperation with a local Alzheimer Association (AlzA), two advisory boards (persons with dementia and relatives of persons with dementia) were established in 2021 as part of the Participatory Pilot Study DelpHi-SW (Dementia: lifeworld-oriented and person-centered support in Siegen-Wittgenstein). DelpHi-SW tested a structured participatory approach to adapt the evidence-based complex dementia care management intervention (DeCM) ( Thyrian et al., 2017 ) to an exemplary regional setting in Germany ( Seidel et al., 2022 ) and prepared it for a subsequent implementation study ( Purwins et al., 2023 ). The advisory board members (ABM) advised on and helped shape the regional and cross-sectoral adaptation and implementation of the DeCM. Their responsibilities included setting topics for DeCM, revising information materials and survey instruments, and discussing issues relating to the concrete implementation of the study. Feedback was reported to other stakeholders and the project team and was incorporated into the DeCM study. The advisory board meetings have been held once a month since July 2021, each lasting 1.5 h They were held in a more familiar setting, accompanied by two academic researchers (KS, female psychologist) and moderated by two experienced AlzA moderators. In the course of dementia, there is an increasing loss of cognitive performance. Alzheimer's disease in particular leads to progressive losses in communicative abilities along the four communication steps of Presentation, Attention, Comprehension , and Remembering , as described in more detail in the TANDEM communication model by Haberstroh et al. (2011) . Disease-related language limitations therefore represent a potential barrier when working with persons with dementia as research partners. Strategies are already available, such as the evidence-based training program TANDEM by Haberstroh and Pantel (2011) . The following communicative strategies, amongst others, appeared to be relevant for the work within the advisory board: linking to old memories and life themes, linking to universal experiences, “What for?” questions, biography work, helping to find the thread again, attentive posture, responding to unfamiliar words in a non-concrete way ( Haberstroh and Pantel, 2011 ).

2.3 Participants

The exploratory interview study was conducted with N = 4 participants (two females) who were between 45 and 80 years old and had a mild degree of dementia of various types with only slightly pronounced psychological and behavioral symptoms. Prior to the collaboration with the ABM and before the interview study, we made the decision not to assess the degree of dementia development. We believe that such an approach would not have been appropriate because it would have been associated with a deficit-oriented attitude toward our co-researchers, would have reminded them more of a patient role and would have made anonymization even more difficult. The psychological and behavioral symptoms became evident during the meetings, e.g., in the form of slight memory loss, difficulty finding the right words for something and/or following complex conversations, attentional fluctuations, or mild mood swings (sadness, impatience). At this point, all interviewees had been ABM for 8 months. All interviewees had sufficient hearing and vision. Interview participation was voluntary, and no financial or other compensation was granted. Ethical review and approval were obtained from the Council for Research Ethics at the University of Siegen (ER_27/2021).

2.4 Materials

Due to the lack of systematic research on the psychological impact of research participation on persons with dementia, no established questionnaire could be used. We therefore developed an interview guide (see Supplementary Table 1 ) using the so-called SPSS method (German language abbreviation for collect, check, sort, subsume) ( Helfferich, 2011 ). First, as many questions as possible on the participatory effect of the advisory board's activities were collected. These questions were then critically checked by the academic researchers to determine whether, for example, they stimulate narration, touch on the relevance systems of the co-researchers and do not ask for facts ( Helfferich, 2011 ). The remaining questions were then bundled and sorted by content. The interview partners were not involved in the development of the interview guidelines.

2.5 Data collection

The four individual and audio recorded interviews took place in March 2022 in the home setting of the four ABMs without the presence of third parties. The interviews lasted 47, 30, 54, and 10 min and were conducted by the academic researcher (KS). The interviewees were informed orally and in writing about the content, aim, potential risks, and audio recording of the interview study. To ensure informed consent, relevant material was adapted regarding dementia-sensitive language and based on documents already drafted by the advisory board members. The consent of the interviewees was continuously checked throughout the entire interview process so that the interviews could be terminated in the event of discomfort, stress, or unwillingness. In two interviews, the academic researcher and the interviewee jointly decided to end the interview due to increasing emotional arousal. Both interviews were included in the analysis, as the main topics had already been addressed in both interviews. Both persons accepted the offer of a consecutive stabilizing conversation. Depending on the particular needs of the interviewees, they were able to express and/or verbalize their emotions in this conversation. With reference to statements already made, the focus was then directed to existing resources or further services. After the interviews, postscripts with additional information on the interview situations were created.

2.6 Data preparation and analysis

To capture speech delays, word-finding inhibitions, and simultaneous speech, all interviews were transcribed (CW, psychologist) according to the extended content-semantic transcription system ( Dresing and Pehl, 2015 ). The transcripts were checked against the audio recordings by the interviewer and supplemented with para- and non-verbal aspects. In the end, a total of 19,095 words were generated. The transcripts were then anonymized according to Bochumer Anonymisierungsmodell ( Bochum anonymization model ; Richter et al., 2021 ) via a combination of factual and absolute anonymization.

Qualitative data were analyzed according to structuring content analysis by Kuckartz and Rädiker (2022) using the software MAXQDA. 1 For this purpose, after (1) initiating text work, both researchers independently and inductively (2) developed thematic main categories, (3) coded the entire material accordingly, (4) summarized the text sections with the same coding, (5) inductively formed subcategories, (6) coded the entire material again with the main and subcategories, and (7) analyzed the data. This involved a category-based analysis along the lines of the main categories, an examination of correlations between the interviews and particularities at the individual case level. Divergent coding was critically discussed, and final coding was conducted by consensus.

Overall, 23 main categories were created from 246 text units, whereby text passages were also assigned to several categories. These main categories can be classified along three dimensions: emotional level, cognitive level , and behavioral level . With 104 text units (42%), most of the codes are assigned to eight main categories of the cognitive level, 81 text units (33%) to nine main categories of the emotional level, and 61 text units (25%) to six main categories of the behavioral level. Table 1 presents the overall results of the coding process.

Table 1 . Overall results of the coding process: main categories and their subcategories sorted by dimensions.

While the three most frequently mentioned main categories of the dimensions of emotion ( Joy, Wellbeing, Sense of belonging and integration ) and cognition ( Competence experience, Making a positive contribution, Satisfaction with advisory board activity ) can be found in all interviews, the distribution and focus of the other categories differed across the four interviews. Therefore, the following results, structured by dimension, focus on the three aspects of experience and behavior that were most frequently described by the respondents in connection with their participation as an ABM. All other categories with sample statements are shown in Supplementary Table 2 . Additionally, specifics at the individual case level are also reported. All quotations are presented linguistically in their original form and capitalization is used to make special linguistic emphases visible.

3.1 Emotional level

This category refers to a feeling of pleasure and happiness that, in contrast to wellbeing, does not describe a global feeling but rather a feeling that is linked to concrete events ( Wirtz, n.d. ). Our results show that joy can refer to the anticipation of the advisory board and to the enjoyment caused by participation in the advisory board itself. The initial anticipation was already evident with the request to join the advisory board:

“You know what, right away. I didn't even think about it, right away yes” (Interview 2, pos. 61–64).

This joy remained even after the start of the project. When asked how they felt when they knew it was the day of the advisory board meeting, the interviewees stated:

“Well, actually I'm always looking forward to it like hell” (Interview 2, pos. 136–139).

“I always find it, am always somewhere actually, when these appointments are, um yes, in such a positive tension” (Interview 3, pos. 31–33).

Joy is also reported in connection with participation in the advisory board itself. The reasons for this are manifold. First, the work itself is enjoyable.

“Therefore, it was just the self-help group, but then I'm really proud, say [name of partner], ‘I have worked hard again!”' (Interview 2, pos. 205-207).

“Well, I, I, you see, I am coming out of my shell…. That makes me happy.” (Interview 1, pos. 648–651).

Joint communication in advisory board meetings is also a pleasure. For example, one interviewee “simply enjoys being able to talk to open people” (Interview 1, pos. 346–347). Another emphasizes this aspect:

“And that was a very short, but VERY intense statement, where I thought: great, amazing, good.” (Interview 3, pos. 298–303).

After all, it is also their own advisory board work that gives them pleasure. When asked how it felt to know that their own suggestions would be considered in the study project, one advisory board member replied:

“Very, very, very, very, very, very, very, VERY nice. Yes.” (Interview 2, pos. 310–313).

3.1.2 Wellbeing

This category includes all text units in which the interviewees describe the perception of being happy and generally satisfied, frequently experiencing positive and rarely negative experiences and feelings ( Eid, 2021 ). Most of the interview statements encoded refer to the advisory board in general. Descriptions such as “incredibly pleasant” (Interview 1, position 634); “pleasant atmosphere” (Interview 3, position 41–42); “such a very um very pleasant atmosphere” (Interview 3, pos. 41–42); “how well one is feeling” (Interview 2, pos. 658); or “I truly LIKE going there” (Interview 1, pos. 250) were often used. One interviewee described it more vividly:

“Almost as if in God's hands.” (Interview 1, pos. 645).

According to a smaller number of codes, Wellbeing is explicitly linked to the personal commitment of the academic researchers, who are perceived, for example, as “nice and kind” (Interview 1, pos. 684).

3.1.3 Sense of belonging and integration

This category refers to the feeling of belonging and being integrated into a group and/or topic on an equal level ( Merriam-Webster (ed.), (n.d.a) ). The co-researching ABM felt that they belong, e.g., to “like-minded people” (Interview 4, pos. 25), to “people affected [by dementia]” (Interview 3, pos. 36) to “other colleagues” (Interview 1, pos. 446), or to people with whom “you can talk about something like that [dementia]” (Interview 1, pos. 207).

“But um, it was nice, they were all people with dementia…. And talking to them and such. I thought it was nice… With like-minded people like that” (Interview 4, pos. 19–25).

The perception of belonging and integration also occurs when the ABM perceive themselves as actively involved in the board activities. Thus, praised the “openness” (Interview 1, pos. 148) to collaboration, saying that one could “suddenly participate on a completely different level” (Interview 1, pos. 525–526). When asked how to recognize good involvement, one interviewee replied:

“You know what, you all ask us. Everyone can add their two cents” (Interview 2, pos. 271–272).

3.2 Cognitive level

3.2.1 competence experience.

Perceiving oneself as competent is the most frequently assigned main category on a cognitive level. The co-researchers felt that they were able to successfully fulfill the tasks and performance requirements of the advisory board through their own actions ( Wirtz, 2021 ). This impact of participation can be seen in various aspects. First, in the realization that they are competent, -for example, “in an area that I can still follow relatively well” (Interview 3, pos. 182). After the meetings, one advisory board member “had the feeling that I had done something good for the advisory board and for myself” (Interview 2, pos. 147–148). Second, the perception of being asked for advice also signaled an attribution of competence:

“So, we are not stupid, we are still quite alive” (Interview 1, pos. 668–670).

Third, all four co-researchers also explicitly confirmed that they did not feel overwhelmed by their participation in the advisory board. One person reported:

“Yes, I feel a bit challenged. Not that it's too much for me” (Interview 1, pos. 517–518).

Challenged without being overwhelmed is also how this advisory board member sees it:

“I noticed that when we did something. I did notice that, right…. Yes, always a bit. But you know, I was [at work] before. I was physically exhausted and mentally exhausted. That was ideal” (Interview 2, pos. 483–489).

Regarding their advisory board activities, the co-researchers not only perceived themselves as competent in real-life situations but also saw themselves as capable in the future:

“Well, I think I'm still someone who can contribute good ideas and has the fantasy to do so. Or simply, um, yes, all these stories that you have somehow experienced” (Interview 3, pos. 433).

When asked whether they would have thought that participation would be possible despite the health restrictions, one person resolutely answered “Yes, I think so” (Interview 4, pos. 190). The four co-researchers not only felt capable, but also, in some cases, attributed a value to their own actions, as explained in the following category.

3.2.2 Making a positive contribution

According to the co-researcher's definition, this main category is based on the realization that their own advisory board activities contribute to a result that they personally perceive as valuable. A further distinction can be made between the positive contributions for oneself and for other people or circumstances (as subcategories). The former can be seen in statements such as:

“Yes, but that also has something that helps me to say where I am now on my path” (Interview 3, pos. 249).

“And it also helps me at the same time” (Interview 1, pos. 293).

Being a co-researcher also provides access to relevant information and “that is also important for us, not just for you” (Interview 2, pos. 30–31).

However, most of the coded statements relate to the positive effect of one's own activity on others.

“Yes, um I have the feeling that despite everything I can somehow still contribute and somehow still pass on certain things” (Interview 3, pos. 612–613).

The positive aspects can also be directed toward the other co-researchers, for example, when their own strengths are brought into the advisory board:

“Yes, that means a bit, I'm doing well. And, I can see from the applause that it does the others good too” (Interview 1, pos. 329–331).

3.2.3 Satisfaction with advisory board activity

This category refers to all text segments in which the co-researchers' perception is expressed that the expected and achieved personal goals within the framework of the advisory board activity coincide ( Zufriedenheit [satisfaction], 2000 ). When asked whether their own expectations had been met, one person replied:

“And HOW!” (Interview 2, pos. 678)

“In any case, in EVERY case” (Interview 2, pos. 67).

In some cases, satisfaction is explicitly linked to the framework conditions perceived as harmonious, for example, regarding the frequency of the advisory board meetings (Interview 2, pos. 693–694; Interview 3, pos. 28–31) or the interpersonal atmosphere (Interview 1, pos. 546–548). Indirectly, the level of satisfaction of the ABM with their participation can be deduced if they recommend participation to other people with disabilities.

“Yes, I can only say what I thought was right for me. And, please, help yourselves.” (Interview 1, pos. 354–355)

“Well, everything here was super great. The people should come.” (Interview 2, pos. 655–656).

3.3 Behavioral level

3.3.1 social communication.

At the behavioral level, the effects of participation are predominantly evident in the category of social communication, understood as the mutual exchange of information about thoughts and feelings ( Bierhoff, n.d. ). The results suggest a further differentiation between communication outside the advisory board about the advisory board and communication within the advisory board on general and disease-related topics (as subcategories). In the context of disease-related topics, the central value of participation in the advisory board becomes apparent.

“You can talk about it….How it goes for everyone and what they do” (Interview 4, pos. 42–44).

“I always think it's good that all these people come together. That we can talk to each other. Because one person does it one way and another person does it differently.” (Interview 4, pos. 75–78).

One would “simply enjoy being able to talk to open people.” (Interview 1, pos. 346–347), and it would be “so relaxed and nice about such an UNpleasant … topic” (Interview 1, pos. 306).

The individual's responsibility as an advisory board member is formulated as follows:

“That I also say um difficult things… and that helps me, of course, that I can get it off my chest.” (Interview 1, pos. 49–55).

The open, inviting culture of discussion is emphasized by the statement that the advisory board is about “mental work and, um, telling stories” (Interview 2, pos. 368) and that everyone can “add their two cents” (Interview 2, pos. 271–272). In the context of non-illness-related communication, the possibility of so-called wellbeing rounds is appreciated.

Outside of the advisory board, the main contacts for discussion of advisory board topics are not only partners and family but also work colleagues. In addition, the advisory board also becomes a topic among friends:

“A lot of people know about me, um, that I have Alzheimer disease somewhere… Um, and with individual friends… where it goes a bit further, um, I also gave them details.” (Interview 3, pos. 544–548).

3.3.2 Social contacts

Our results show that the advisory board offers all co-researchers the opportunity to make positive social contacts. On the one hand, this refers to the academic researchers.

“I feel comfortable with you… You are nice and kind.” (Interview 1, pos. 380–382).

However, above all, the advisory board is described, for example, as a “nice group” (Interview 3, pos. 51).

“They were all people with dementia…. And, talking to them and all that. I thought it was nice… We were just among ourselves.” (Interview 4, pos. 19–59).

3.3.3 Contributing resources

On the advisory board, the co-researchers were able to contribute their own resources, for example, personal topics, abilities, and skills. This concerns, for example, “All these stories that you have somehow experienced, um, as a [profession].” (Interview 3, pos. 433).

“Well, I think I'm still someone who can come up with good ideas somewhere, and has the imagination to do so.” (Interview 3, pos. 433).

3.4 Additional findings

There are distinct subcategories for the main categories of Joy, Reflection on one's own dementia disease , and Social communication , which do not overlap in the coding. This is not the case for the perception of Making a positive contribution . Here, the co-researchers think simultaneously about making a positive contribution both for themselves and for others. For example, when speaking of a “…win–win situation. I would like to help the other people and help myself too.” (Interview 2, pos. 26–27).

Furthermore, there are connections between the different main and sub-categories. A text segment can address several thematic aspects, which is why several main and sub-categories can overlap or nest within one another. Such overlap can be observed particularly frequently in the behavioral category of S ocial communication within the advisory board . This applies, for example, to the combination of Social communication and Being authentic . Furthermore, Social communication is often flanked by emotional experience components. Several text segments on internal advisory board communication are also labeled with the main code Emotional relief . In this way, members of the advisory board can “talk things out” (Interview 4, pos. 42) and “get rid of stressful thoughts” (Interview 1, pos. 54, pos. 137–138). A Sense of belonging and integration is also often described when the ABM talk to each other. This generally applies when the co-researchers are among “like-minded people” (Interview 4, pos. 22–27) with whom they can talk about their own dementia. Both, Social communication within the advisory board and the Sense of belonging and integration are closely linked to the behavioral category of positive Social contacts . For the latter, the results often show a connection with the emotional category of Wellbeing . This applies both to contact between co-researchers and academic researchers and to contact among the ABM. The cognitive category Competence experience was also frequently coded together with other categories, such as the category Making a positive contribution to others . In the corresponding text segments, the co-researchers reported, for example, that they “did something good” for the advisory board (Interview 2, pos. 147–148) or “helped to help others” (Interview 1, pos. 732–733). On an emotional level, this perception of expertise is often accompanied by Pride . For example, when the co-researchers “worked hard again” (Interview 2, pos. 207) or participated “on a completely different level” (Interview 1, pos. 525–526) in the board meetings.

Regarding the psychological effects of participation as an ABM, different central themes can be identified for each co-researcher. In interview 4, statements coded to the three categories Social contacts, Social communication within the advisory board , and Sense of belonging and integration are mentioned particularly often and are interwoven with each other. This combination of categories accounts for more than half of the codes in this interview. For this co-researcher, the advisory board primarily offers the opportunity to communicate with other people about dementia , to make positive social contacts and to behave authentically . On an emotional level, this person feels disproportionately comfortable, particularly relieved and supported . Interview 2 focused on cognitive aspects, and the advisory board was equated with cognitive stimulation with striking frequency. On an emotional level, this is accompanied by great j oy and pride . In interview 3, the differentiated reflection on needs and d ementia was striking. Only this co-researcher talks about the negatively connoted perception of deficits in the context of the board's work and describes negative feelings of insecurity and sadness . On the other hand, this person feels confident and often competent . This experience of competence is linked to the two categories of contributing resources and the perception of making a positive contribution to others . On a personal level, participation in the advisory board had such predominantly positive effects that the person decided to be involved in other working groups as well.

4 Discussion

As one of the first studies from an explicitly psychological perspective, this project investigated the psychological effects of research participation on persons with dementia. We found various psychological effects along the three dimensions of emotion, cognition, and behavior, with a focus on the cognitive level across all interviews. As expected, and in line with the literature, the present study also shows that the impact of advisory board activity on co-researchers is of significant importance ( Staley, 2015 ; Swarbrick et al., 2019 ). For reasons of clarity, we discuss the results according to the dimensions found.

4.1 Cognitive effects of research participation

On a cognitive level, it is noticeable that the co-researching ABM often perceive themselves as competent and are able to verbalize this. This finding is consistent with previous literature and can be found both in general studies about research partnerships ( Hoekstra et al., 2020 ) as well as in studies involving people with dementia ( Clare et al., 2008 ; Tanner, 2012 ; Littlechild et al., 2015 ; McConnell et al., 2019 ). In the context of research participation, a minimum level of skill, such as in spatial orientation, attention, and language, is required ( van Baalen et al., 2011 ). In terms of language skills, mildly affected persons are more likely to understand rather simple verbal messages, and memory and word finding may already be impaired, but grammar and attention are still largely intact ( Kuemmel et al., 2014 ). With suitable methods, people with dementia with early-onset impairments in particular can therefore formulate and represent their thoughts, feelings, and interests themselves ( Aggarwal et al., 2003 ; Wißmann, 2021 ).

The cognitively stimulating character of the advisory board meetings is perceived positively by the co-researchers and, in their view, distinguishes the advisory board from the meetings of the self-help group. Ashcroft and colleagues ( Ashcroft et al., 2016 ) were previously able to identify intellectual stimulation as a positive effect of participatory involvement. This is relevant because wide-ranging cognitive stimulation, which includes sensory experiences, positive memories, communication, and social contact, can help to preserve the remaining cognitive resources of persons living with dementia ( Ivemeyer and Zerfaß, 2006 ). It is also noticeable that the ABMs not only perceive themselves as competent but also attribute positive value to their actions. The perception of making a positive, meaningful contribution to oneself and/or others in the context of research participation has already been extensively document-ed in the literature ( Fudge et al., 2007 ; Steeman et al., 2007 ; Littlechild et al., 2015 ; Ashcroft et al., 2016 ; Waite et al., 2019 ). Some of the statements made also describe a give and take in the context of their advisory board activities. If those affected give back the support they receive through their own contributions, this can in turn have a positive effect on their subjective wellbeing—a fact that could also be expanded as part of targeted interventions ( Godde et al., 2016 ).

Our results also show the emancipatory potential of participatory projects discussed in the literature ( Clare et al., 2008 ; Arbeitskreis Kritische Gerontologie der DGGG, 2016 ; McConnell et al., 2019 ). In this way, the co-researchers continue to experience themselves as effective by contributing their individual competences and strengths and experience themselves as competent in the sense of self-efficacy and making a positive contribution to themselves and others. This is a relevant aspect, as the personal resources of the co-researching persons are understood as protective factors that can support coping with their disease and improve their quality of life and wellbeing ( Arbeitskreis Kritische Gerontologie der DGGG, 2016 ; Gruber, 2020 ).

4.2 Behavioral effects of research participation

A very significant, positive effect of the advisory board's activities can be seen at the behavioral level in the form of social communication and positive social contacts. This finding is also not surprising, as a positively perceived expansion of the social network has already been documented ( Fudge et al., 2007 ; Litherland et al., 2018 ; Hoekstra et al., 2020 ). As our findings show, the co-researchers even feel encouraged to be able to behave authentically among people with the same condition. Participating in interesting projects together with others also prevents from withdrawing at home.

4.3 Emotional effects of research participation

On an emotional level, the advisory board represents joy and wellbeing for the co-researchers with almost half of all coding in the interviews falling into these two categories. How central a shared joyful experience is for people with disabilities is shown by the fact that fun is considered one of the key therapeutic principles of cognitive stimulation therapy ( Aguirre et al., 2018 ). Our results also confirm findings showing that people living with dementia have a great need for appreciation and recognition ( Niebuhr, 2010 ). This relates to biographical and life experiences, which serve as personal resources for the advisory board, as well as participation in the advisory board itself. The ABMs describe being proud when they receive positive feedback on their participatory involvement, both within and outside the advisory board. Previous studies have shown that co-researchers experience appreciation as part of their research participation ( Fudge et al., 2007 ; Litherland et al., 2018 ; Hoekstra et al., 2020 ).

A special feature of research with people with dementia is that co-researchers are inevitably confronted with their dementia as part of their advisory board activities. As described by the ABMs, this stimulates reflection processes that involve an active examination of the condition and the course of their own illness. This has already been considered as an opportunity for individuals to come to terms with their illness ( Ashcroft et al., 2016 ). Providing participatory support for dementia research can even give life with this disease a new, independent value ( Clare et al., 2008 ). However, confrontation with dementia can also have negative, stressful effects on co-researchers. This is particularly true when those affected perceive increasing disease-related limitations and losses ( Span et al., 2018 ). In the interviews, sadness and insecurity were found to be negatively connoted feelings and deficits in the context of the advisory board activity. Interesting, but congruent with previous findings, is the fact that these negative thoughts and feelings do not appear to carry much weight in the overall view of research participation ( Ashcroft et al., 2016 ; Weidekamp-Maicher, 2021 ). The ABM seem to be able to allow and balance these opposing feelings in the context of their advisory board activities and successfully self-integrate the negative feelings, so that a view of the positively perceived aspects of the advisory board becomes clear again. Other negatively connoted thoughts or feelings, as described in the literature, such as dissatisfaction, the feeling of not being heard and appreciated, or feeling overwhelmed ( Ashcroft et al., 2016 ; Hoekstra et al., 2020 ) were not addressed by the ABM. On the contrary, the co-researchers reported great satisfaction with the frequency of the meetings, the composition of the advisory board, the working nature of the meetings, and the results of their own advisory board activities.

4.4 Additional findings

Our results show a strong connection between social and emotional components. This suggests that the advisory board seems to fulfill basic psychosocial needs. We would like to combine this result with current findings that social and, above all, emotional support are important protective factors for the life expectancy of people living with dementia ( Blotenberg et al., 2024 ). An absence of both appears to be a risk factor for shorter life expectancy, over and above other known clinical factors. Participation can be one way to find social and emotional support. Therefore, our results strengthen the call for greater attention to be given to the psychosocial needs of people with disabilities ( Blotenberg et al., 2024 ).

In the context of research, older people, even those without dementia, are assumed to be uncooperative or uninterested in research ( Wanka and Urbaniak, 2023 ). In contrast, our results show a strong need among ABM to reassure themselves of their remaining competencies by repeatedly addressing their own skills and participative contributions. However, it appears that the application of remaining skills seems to be the central issue. An increase in skills, as described in several studies on patient and public involvement ( Fudge et al., 2007 ; Baldwin et al., 2018 ; Hoekstra et al., 2020 ), was not explicitly addressed in the interviews.

Our results show distinct inter-individual differences in the motivation to participate in advisory boards and the psychological impact of research participation. This speaks to the importance of continuing to see persons living with dementia as individuals despite having the same condition and, above all, taking their individual needs and personality into account when working with them as co-researchers.

4.5 Strengths and limitations

With the content analysis method according to Kuckartz and Rädiker (2022) , a method was chosen that allows a priori category formation from empirical data and guidelines as well as inductive, explorative category formation on the material or a combination of both variants. This allowed a previously little investigated research subject to be comprehensively illuminated and described in greater depth. Both the data generation and evaluation followed strict quality criteria. This applies above all to intersubjective traceability, which was ensured above all through detailed procedural documentation, consistent verification by both researchers regarding coding, and the explication and documentation of all research steps. The standardization of procedures, e.g., interview guidelines, transcription, anonymization, and coding rules, increases procedural reliability, i.e., trust in the data and its interpretation. The different perspectives of the two coders are seen as a further strength. While one was an active part of the interviews, the other only knew the interview situation from the audio recordings and postscripts. Critically reflecting on deviating coding and ultimately reaching a consensus on assignments, therefore, meant a very intensive examination of the data material and contributed to internal consistency. The interviews were partly characterized by very long units of meaning, interjections, and digressions regarding the individual characteristics of the interviewees' speech production and comprehension. Communicative validation during the interviews, i.e., summarizing or reflecting the statements to the interviewees, clarified comprehension difficulties and increased the probability that what was said corresponded to what was meant.

Four interviews were not and are not intended to generate results representative of the entire group of persons living with dementia. However, in contrast to the principle of external validity in quantitative research, the focus in qualitative research is on authentic or comprehensive representation ( Kruse, 2015 ). Nevertheless, the characteristics of individual interviewees may have played a greater role in the overall presentation of the results. This is another reason why impact analysis at the individual case level is so important. In line with other literature ( Arbeitskreis Kritische Gerontologie der DGGG, 2016 ), the group of co-researching persons with dementia was also found to have a relatively high level of formal education, socioeconomic status, and no migration background. This is another reason why the results do not aim to generalize and represent a specific group of people. As only people with mild dementia were interviewed, no statement can be made about the experience and behavior of people with more severe dementia. Furthermore, the practical support provided by the personal environment and the AlzA favored the participation of the co-researchers. This indicates that they therefore have considerable social capital ( James and Buffel, 2023 ), which is not the case for the general population of people with dementia. The interviews were conducted by an academic researcher who was known to the co-researchers from the advisory board meetings. Although existing trust and mutual sympathy promote a pleasant and open discussion atmosphere, such an established relationship between speakers could also lead to distortions in response behavior during an interview, e.g., in the sense of social desirability. This applies here in particular because the interviews took place in the middle of the project period, and both parties were interested in a positive evaluation. Unwanted power dynamics between academics and co-researchers must also be considered.

4.6 Practical implications

In terms of an interdisciplinary view of participation and, above all, research participation of persons with dementia, we advocate greater consideration of the topic in the realm of psychology. The biopsychosocial model can provide an integrative framework to explain the psychological effects of participation on the co-researchers using established psychological theories. People in the later stages of dementia, those with a migration background and those with insufficient social resources must also be given access to research projects and thus also to the associated positive psychological effects. Based on the findings on the high socioeconomic status of most co-researchers in participatory research projects, this also touches on the ethical issue of perpetuating existing inequalities through participatory research.

In addition, a procedure for dealing with emotionally stressful interview situations with people with dementia should be developed and empirically evaluated.

5 Conclusion

The largely positive feedback from the advisory board members shows that people with dementia are very happy to be involved in research efforts and contribute to the knowledge gained as experts of their own lives. Nonetheless, various circumstances must be considered when conducting research with them to enable them to have a positive experience of participation. It is particularly important to create conditions that allow co-researchers to experience the positive effects of their participatory engagement, that they are challenged but not overwhelmed, and that negative emotional reactions to perceived disease-related losses are appropriately addressed. Despite the increasing number of participatory research projects with people with dementia, the impact of research participation on those affected is still not extensively considered ( Backhouse et al., 2016 ; Rivett, 2017 ; Bethell et al., 2018 ; Harris et al., 2018 ). With our study, we would like to contribute to psychology's involvement in the topic.

Data availability statement

The datasets presented in this article are not readily available because for data protection purposes, no raw data can be made available, as it is highly likely that conclusions could be drawn about individual interviewees from these data. Requests to access the datasets should be directed to katja.seidel@uni-siegen.de .

Ethics statement

The studies involving humans were approved by Council for Research Ethics at the University of Siegen (ER_27/2021). The studies were conducted in accordance with the local legislation and institutional requirements. The participants provided their written informed consent to participate in this study.

Author contributions

KS: Conceptualization, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Resources, Visualization, Writing – original draft, Writing – review & editing. CW: Formal analysis, Writing – original draft. JT: Funding acquisition, Writing – review & editing. JH: Funding acquisition, Supervision, Writing – review & editing.

The author(s) declare financial support was received for the research, authorship, and/or publication of this article. This research was funded by Federal Ministry of Culture and Science of the State of North Rhine-Westphalia, Zukunftsfonds 2019, AZ 224-1.08.01.04, a grant provided by the German Federal Ministery of Health (Bundesministerium für Gesundheit, BMG, grant#: ZMI1-2521FSB907) in the framework of the National Dementia Strategy and transfer funds (third mission), provided by University of Siegen.

Acknowledgments

The authors would especially like to thank the four interviewees for their openness, trust, support, and cooperation. We would also like to thank the local Alzheimer Society e. V. for their tireless support in initiating and organizing the advisory board meetings as well as their critical contributions and impulses for cooperation with the people living with dementia.

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Supplementary material

The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/frdem.2024.1421541/full#supplementary-material

1. ^ MAXQDA [Computer software] (2022). VERBI Software .

Aggarwal, N., Vass, A. A., Minardi, H. A., Ward, R., Garfield, C., and Cybyk, B. (2003). People with dementia and their relatives: personal experiences of Alzheimer's and of the provision of care. J. Psychiatr. Ment. Health Nurs. 10, 187–197. doi: 10.1046/j.1365-2850.2003.00550.x

PubMed Abstract | Crossref Full Text | Google Scholar

Aguirre, E., Spector, A., Streater, A., Hoe, J., Woods, B., and Orrell, M. (2018). Cognitive Stimulation Therapy: An Evidence-Based Group Program for People With Dementia, Advanced Course With Cross-References to the Basic Course. Dortmund: verlag modernes lernen.

Google Scholar

Arbeitskreis Kritische Gerontologie der DGGG and Aner, K. (2016). Discussion paper on participation and participative methods in gerontology. Z. Gerontol. Geriatr. 49, 143–147. doi: 10.1007/s00391-015-1016-7

Ashcroft, J., Wykes, T., Taylor, J., Crowther, A., and Szmukler, G. (2016). Impact on the individual: what do patients and carers gain, lose and expect from being involved in research? J. Ment. Health 25, 28–35. doi: 10.3109/09638237.2015.1101424

Backhouse, T., Kenkmann, A., Lane, K., Penhale, B., Poland, F., and Killett, A. (2016). Older care-home residents as collaborators or advisors in research: a systematic review. Age Ageing 45, 337–345. doi: 10.1093/ageing/afv201

Baldwin, J. N., Napier, S., Neville, S., and Wright-St Clair, V. A. (2018). Impacts of older people's patient and public involvement in health and social care research: systematic review. Age Ageing 47, 801–809. doi: 10.1093/ageing/afy092

Banks, S., Herrington, T., and Carter, K. (2017). Pathways to co-impact: action research and community organising. Educ. Act. Res. 25, 541–559. doi: 10.1080/09650792.2017.1331859

Crossref Full Text | Google Scholar

Bethell, J., Commisso, E., Rostad, H. M., Puts, M., Babineau, J., Grinbergs-Saull, A., et al. (2018). Patient engagement in research related to dementia: a scoping review. Dementia. 17, 944–975. doi: 10.1177/1471301218789292

Bierhoff, H.-W. (n.d.). Social Interaction and Communication . Available online at: https://dorsch.hogrefe.com/gebiet/sozial-und-kommunikationspsychologie (accessed March 18, 2024).

Blotenberg, I., Boekholt, M., Michalowsky, B., Platen, M., Rodriguez, F. S., Teipel, S., et al. (2024). What influences life expectancy in people with dementia? Social support as an emerging protective factor. Age Ageing 53:afae044. doi: 10.1093/ageing/afae044

BMFSFJ (2020). The National Dementia Strategy for Germany . Available online at: https://www.nationale-demenzstrategie.de/ (accessed March 18, 2024).

Brooke, J. (2019). Equity of people with dementia in research, why does this issue remain? J. Clin. Nurs. 28, 3723–3724. doi: 10.1111/jocn.14957

Burton, A., Ogden, M., and Cooper, C. (2019). Planning and enabling meaningful patient and public involvement in dementia research. Curr. Opin. Psychiatry 32, 557–562. doi: 10.1097/YCO.0000000000000548

Clar, C., and Wright, M. T. (2020). Participatory Research in German-Speaking Countries – An Inventory . Alice Salomon Hochschule Berlin. Available online at: https://opus4.kobv.de/opus4-ash/frontdoor/index/index/docId/324 (accessed March 18, 2024).

Clare, L., Rowlands, J. M., and Quin, R. (2008). Collective strength. Dementia 7, 9–30. doi: 10.1177/1471301207085365

Dening, T., Gosling, J., Craven, M. P., and Niedderer, K. (2020). Guidelines for Designing With and for People With Dementia. Available online at: https://designingfordementia.eu/wp-content/uploads/2020/02/Design-Guidelines-v3.pdf

Di Lorito, C., Birt, L., Poland, F., Csipke, E., Gove, D., Diaz-Ponce, A., et al. (2017). A synthesis of the evidence on peer research with potentially vulnerable adults: how this relates to dementia. Int. J. Geriatr. Psychiatry 32, 58–67. doi: 10.1002/gps.4577

Dresing, T., and Pehl, T., (eds.). (2015). Transcription Practice Book: Rule Systems, Software and Practical Instructions for Qualitative Researchers . Dr. Dresing und Pehl GmbH. Available online at: https://d-nb.info/1077320221/34 (accessed March 18, 2024).

Eid, M. (2021). Wohlbefinden [Well-being] . Dorsch – Lexikon der Psychologie. Available online at https://dorsch.hogrefe.com/stichwort/wohlbefinden (accessed March 18, 2024).

Fudge, N., Wolfe, C. D. A., and McKevitt, C. (2007). Involving older people in health research. Age Ageing 36, 492–500. doi: 10.1093/ageing/afm029

Godde, B., Voelcker-Rehage, C., and Olk, B. (2016). Introduction to Gerontopsychology. UTB Psychologie: Vol. 4567 . München: Ernst Reinhardt Verlag.

Gregory, S., Wells, K., Forysth, K., Latto, C., Szyra, H., Saunders, S., et al. (2018). Research participants as collaborators: background, experience and policies from the PREVENT Dementia and EPAD programmes. Dementia 17, 1045–1054. doi: 10.1177/1471301218789307

Gruber, T. (2020). Therapy Tools Resource Activation . Weinheim: Beltz.

Haberstroh, J., Neumeyer, K., Krause, K., Franzmann, J., and Pantel, J. (2011). Tandem: communication training for informal caregivers of people with dementia. Aging Mental Health 15, 405–413. doi: 10.1080/13607863.2010.536135

Haberstroh, J., and Pantel, J. (2011). Kommunikation bei Demenz: TANDEM-Trainingsmanual . Berlin; Heidelberg: Springer.

Harris, J., Cook, T., Gibbs, L., Oetzel, J., Salsberg, J., Shinn, C., et al. (2018). Searching for the impact of participation in health and health research: challenges and methods. Biomed Res. Int. 2018:9427452. doi: 10.1155/2018/9427452

Helfferich, C. (2011). The Quality of Qualitative Data . Wiesbaden: VS Verlag für Sozialwissenschaften.

Hirschberg, M. (2010). Participation - A Cross-Sectional Concern of the UN Convention on the Rights of Persons With Disabilities . Positionen: Monitoring-Stelle zur UN-Behindertenrechtskonvention, 3. Available online at: https://kobra.uni-kassel.de/handle/123456789/13053#

Hoekstra, F., Mrklas, K. J., Khan, M., McKay, R. C., Vis-Dunbar, M., Sibley, K. M., et al. (2020). A review of reviews on principles, strategies, outcomes and impacts of research partnerships approaches: a first step in synthesising the research partnership literature. Health Res. Policy Syst. 18:51. doi: 10.1186/s12961-020-0544-9

Ivemeyer, D., and Zerfaß, R. (2006). Demenztests in der Praxis: Ein Wegweiser (2., aktualisierte und erw. Aufl.) . Elsevier Urban and Fischer. Available online at: http://www.socialnet.de/rezensionen/isbn.php?isbn=978-3-437-22157-6 (accessed March 18, 2024).

James, H., and Buffel, T. (2023). Co-research with older people: a systematic literature review. Ageing Soc. 43, 2930–2956. doi: 10.1017/S0144686X21002014

Kongats, K., Springett, J., Wright, M. T., and Cook, T. (2018). “Demonstrating impact in participatory health research,” in Springer eBook Collection. Participatory Health Research: Voices From Around the World , eds. M. T. Wright, and K. Kongats (Cham: Springer), 55–69.

Kruse, J. (2015). Qualitative Interview Research-An Integrative Approach . Weinheim: Beltz Juventa.

Kuckartz, U., and Rädiker, S. (2022). Qualitative Content Analysis - Methods, Practice, Computer Support: Basic Texts Methods . Grundlagentexte Methoden. Beltz Juventa. Available online at: https://www.beltz.de/fileadmin/beltz/leseproben/978-3-7799-6231-1.pdf (accessed March 18, 2024).

Kuemmel, A., Haberstroh, J., and Pantel, J. (2014). CODEM instrument. GeroPsych. 27, 23–31. doi: 10.1024/1662-9647/a000100

Litherland, R., Burton, J., Cheeseman, M., Campbell, D., Hawkins, M., Hawkins, T., et al. (2018). Reflections on PPI from the ‘Action on Living Well: Asking You' advisory network of people with dementia and carers as part of the IDEAL study. Dementia 17, 1035–1044. doi: 10.1177/1471301218789309

Littlechild, R., Tanner, D., and Hall, K. (2015). Co-research with older people: perspectives on impact. Qual. Soc. Work 14, 18–35. doi: 10.1177/1473325014556791

McConnell, T., Sturm, T., Stevenson, M., McCorry, N., Donnelly, M., Taylor, B. J., et al. (2019). Co-producing a shared understanding and definition of empowerment with people with dementia. Res. Involv. Engagem. 5:19. doi: 10.1186/s40900-019-0154-2

Merriam-Webster (ed.) (n.d.a), . Integration . Merriam-Webster. Available online at: https://www.merriam-webster.com/dictionary/integration (accessed March 18 2024).

Merriam-Webster (n.d.b). Intervention . In Merriam-Webster.com dictionary. Available online at: https://www.merriam-webster.com/dictionary/intervention (accessed March 18 2024).

Niebuhr, M, . (ed.). (2010). Interviews with dementia Patients - Wishes, Needs and Expectations from the Perspective of Those Affected; a Qualitative Study on the Subjective Quality of Life of Dementia patients . Köln: Kuratorium Dt. Altershilfe.

O'Brien, B. C., Harris, I. B., Beckman, T. J., Reed, D. A., and Cook, D. A. (2014). Standards for reporting qualitative research: a synthesis of recommendations. Acad. Med. 89, 1245–1251. doi: 10.1097/ACM.0000000000000388

Purwins, D., Fahsold, A., Quasdorf, T., Berthold, H., Klas, T., Albers, B., et al. (2023). Implementation of dementia care management in routine care (RoutineDeCM): a study protocol for process evaluation. BMJ Open 13:e072185. doi: 10.1136/bmjopen-2023-072185

Reyes, L., Scher, C. J., and Greenfield, E. A. (2023). Participatory research approaches in Alzheimer's disease and related dementias literature: a scoping review. Innovat. Aging 7:igad091. doi: 10.1093/geroni/igad091

Richter, C., Kwelik, N., Müller, M., and Severing, L. (2021). “Anonymizing qualitative data and preparing it for secondary analyses: The Bochum Anonymization Model (BAM),” in Qualitative Sekundäranalysen , eds. C. Richter, and K. Mojescik (Wiesbaden: Springer Fachmedien Wiesbaden), 153–184.

Rivett, E. (2017). Research involving people with dementia: a literature review. Work. Older People 21, 107–114. doi: 10.1108/WWOP-11-2016-0033

Schlechter, C. R., Del Fiol, G., Lam, C. Y., Fernandez, M. E., Greene, T., Yack, M., et al. (2021). Application of community - engaged dissemination and implementation science to improve health equity. Prev. Med. Rep. 24:101620. doi: 10.1016/j.pmedr.2021.101620

Seidel, K., Quasdorf, T., Haberstroh, J., and Thyrian, J. R. (2022). Adapting a dementia care management intervention for regional implementation: a theory-based participatory barrier analysis. Int. J. Environ. Res. Public Health 19:5478. doi: 10.3390/ijerph19095478

Slegers, K., Duysburgh, P., and Hendriks, N. (2015). CoDesign with people living with cognitive and sensory impairments. CoDesign 11, 1–3. doi: 10.1080/15710882.2015.1020102

Span, M., Hettinga, M., Groen-van de Ven, L., Jukema, J., Janssen, R., Vernooij-Dassen, M., et al. (2018). Involving people with dementia in developing an interactive web tool for shared decision-making: experiences with a participatory design approach. Disabil. Rehabil. 40, 1410–1420. doi: 10.1080/09638288.2017.1298162

Staley, K. (2015). ‘is it worth doing?' Measuring the impact of patient and public involvement in research. Res. Involv. Engagem. 1:6. doi: 10.1186/s40900-015-0008-5

Steeman, E., Godderis, J., Grypdonck, M., de Bal, N., and Dierckx de Casterlé, B. (2007). Living with dementia from the perspective of older people: Is it a positive story? Aging Mental Health 11, 119–130. doi: 10.1080/13607860600963364

Swaffer, K. (2016). Co-production and engagement of people with dementia: the issue of ethics and creative or intellectual copyright. Dementia 15, 1319–1325. doi: 10.1177/1471301216659213

Swarbrick, C. M., Doors, O., Educate Davis, K., and Keady, J. (2019). Visioning change: Co-producing a model of involvement and engagement in research (Innovative Practice). Dementia 18, 3165–3172. doi: 10.1177/1471301216674559

Tanner, D. (2012). Co-research with older people with dementia: experience and reflections. J. Mental Health 21, 296–306. doi: 10.3109/09638237.2011.651658

Thraves, L. (2015). Alzheimer's Society's View on Equality, Discrimination, and Human Rights . Available online at: https://www.alzheimers.org.uk/about-us/policy-and-influencing/what-we-think/equality-discrimination-human-rights (accessed March 18, 2024).

Thyrian, J. R., Hertel, J., Wucherer, D., Eichler, T., Michalowsky, B., Dreier-Wolfgramm, A., et al. (2017). Effectiveness and safety of dementia care management in primary care: a randomized clinical trial. JAMA Psychiatry 74, 996–1004. doi: 10.1001/jamapsychiatry.2017.2124

Tong, A., Sainsbury, P., and Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int. J. Qual. Health Care 19, 349–357. doi: 10.1093/intqhc/mzm042

van Baalen, A., Vingerhoets, A. J., Sixma, H. J., and de Lange, J. (2011). How to evaluate quality of care from the perspective of people with dementia: an overview of the literature. Dementia 10, 112–137. doi: 10.1177/1471301210369320

Vinay, R., and Biller-Andorno, N. (2023). A critical analysis of national dementia care guidances. Health Policy 130:104736. doi: 10.1016/j.healthpol.2023.104736

Waite, J., Poland, F., and Charlesworth, G. (2019). Facilitators and barriers to co-research by people with dementia and academic researchers: findings from a qualitative study. Health Expect. 22, 761–771. doi: 10.1111/hex.12891

Wanka, A., and Urbaniak, A. (2023). Participatory approaches in age(ing) research : definitions, fields of application and challenges in different research stages. Z. Gerontol. Geriatr. 56, 357–361. doi: 10.1007/s00391-023-02209-9

Weidekamp-Maicher, M. (2021). People With Dementia in the Participatory Development of Technology . Wiesbaden: Springer Fachmedien Wiesbaden.

Wied, T. S., Haberstroh, J., Gather, J., Karakaya, T., Oswald, F., Qubad, M., et al. (2021). Supported decision-making in persons with dementia: development of an enhanced consent procedure for lumbar puncture. Front. Psychiatry 12:780276. doi: 10.3389/fpsyt.2021.780276

Wied, T. S., Knebel, M., Tesky, V. A., and Haberstroh, J. (2019). The human right to make one's own choices – implications for supported decision-making in persons with dementia: a systematic review. Eur. Psychol. , 24, 146–158. doi: 10.1027/1016-9040/a000372

Wirtz, M. A. (2021). Kompetenz . Dorsch – Lexikon der Psychologie. Available online at: https://dorsch.hogrefe.com/stichwort/kompetenz (accessed March 18, 2024).

Wirtz, M. A. (n.d.). Freude [Joy] . online-lexicon: Dorsch – Lexikon der Psychologie.

Wißmann, P. (2021). Partizipation, Selbsthilfe, und Selbstvertretung, frühbetroffene Menschen mit kognitiver Beeinträchtigung: Was ist drin? Was fehlt? Was sollte getan werden? Stellungnahme zur Nationalen Demenzstrategie Deutschland. Demenz Support Stuttgart. Available online at: https://www.demenzsupport.de/media/stellungnahme_zur_nationalen_demenzstrategie_wissmann_17_02_2021.pdf (accessed March 18, 2024).

Wright, M., Allweiss, T., and Schwersensky, N. (2021). “Partizipative Gesundheitsforschung,” in Leitbegriffe der Gesundheitsförderung und Prävention . Glossar zu Konzepten, Strategien und Methoden Bundeszentrale für gesundheitliche Aufklärung (BZgA). doi: 10.17623/BZGA:Q4-i085-2.0

Wright, M. T., Allweiss, T., and Schwersensky, N. (2016). Participatory Health Research.

Zufriedenheit [satisfaction] (2000). Lexikon der Psychologie . Available online ar: https://www.spektrum.de/lexikon/psychologie/zufriedenheit/17297 (accessed March 18, 2024).

Keywords: patient participation, participatory research, dementia, psychology, qualitative research, patient engagement, stakeholder engagement, patient and public involvement

Citation: Seidel K, Winiarski C, Thyrian JR and Haberstroh J (2024) The psychological effects of research participation on people with dementia: findings from a German exploratory interview study. Front. Dement. 3:1421541. doi: 10.3389/frdem.2024.1421541

Received: 22 April 2024; Accepted: 19 July 2024; Published: 07 August 2024.

Reviewed by:

Copyright © 2024 Seidel, Winiarski, Thyrian and Haberstroh. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Katja Seidel, katja.seidel@uni-siegen.de

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

News Center

• Browse Archive
• Browse By Administrative Unit
• Browse By College/School
• Accomplishments
• Class Notes
• Experts Directory
• UNLV In The News
• UNLV Today Announcements
• UNLV Magazine
• Share a Story Idea
• Submit Class Note
• Submit a UNLV Today Accomplishment or Announcement
• Directories

Quick Links

• Directories Home
• Colleges, Schools, and Departments
• Administrative Units
• Research Centers and Institutes
• Resources and Services
• Employee Directory
• Contact UNLV
• Social Media Directory
• UNLV Mobile Apps
• News Center Home
• UNLV Today Home

Seeking Current or Former Dementia Caregivers to Participate in Research Study

We are examining the benefit of a type of a meditation practice. Our goal is to understand your experiences during and after the practice. We will collect some information at the beginning of the study and a few times during and after the study. We will also train and provide you with a link on how to do this meditation practice after the study so you can continue the practice. 

Please consider  participating in this study  if you are dementia caregivers and have not practice any meditation in the last two months: You can click on screening questionnaires if you are interested (this will only take 5 minutes of your time). Once you pass the screening questions, you will be taken to the study questionnaires (this will take 30 minutes or less of your time), once we have enough study participants the link will be closed. We will then randomize you into two training groups. Training session may be longer than 30 minutes. The meditation session is 21-day session and will need 25 minutes for meditation and 10 minutes for daily online journal. We will email you the time to join. These 21 days meditation sessions will be on the Zoom. First day we will have orientation session too which will be 10 minutes. Our trained research staff will be there to guide and answer any questions. There will be two more surveys (at 30 and 60 days) and will email you the study link. 

Your participation in this study is voluntary. You may withdraw at any time.  You are encouraged to ask questions about this study at the beginning or any time during the research study. 

This research project is led by Dr. Nirmala Lekhak at the University of Nevada Las Vegas, School of Nursing. 

If you have any questions about this study, please contact the principal investigator by email:  [email protected]  or by phone: 702-895-5983.

More Information

Related website.

Link: https://unlv.co1.qualtrics.com/jfe/form/SV_elllbbeRhbLgucS

Contact: Nirmala Lekhak

Email: [email protected]

Phone: 702-895-5983

More of Today's Announcements

• Announcements Seeking Current or Former Dementia Caregivers to Participate in Research Study
• HR and Employment Academic/Administrative/Postdoctoral Scholar Employment Opportunities

People in the News

Pioneering Robotic Surgery at the Kerkorian School of Medicine

Dr. Richard Baynosa shares how advances in robotic techniques are improving patient outcomes.

Outgoing Ana Hacsi Served as a Jack of All Trades for Student Services Center

The former College of Education administrative assistant is the recipient of the first-place Classified Employee of the Year award.

Giving Back to Veterans Is a Duty and an Honor for Kinesiology Alumnus

Dr. John Pierce creates a scholarship to support student veterans in UNLV's School of Integrated Health Sciences.

You need to enable JavaScript to run this app.