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Patient Discrimination during a Health Care Encounter

New Research from Paige Nong

Phd student in health management and policy.

December 16, 2020

A new paper published this week in JAMA Network Open looks at patient experiences of discrimination in the US health system. Paige Nong, a PhD student in the Department of Health Management and Policy at the University of Michigan School of Public Health and lead author of the paper, spoke with us to about discrimination in the health care system and findings from the national survey the team conducted for this research.

The types of discrimination a person could encounter in a health care setting varied, with the survey finding that 21% of non-institutionalized, English-speaking US adults have experienced discrimination while seeking medical care.

“It is of critical importance that we address the harms being done to patients within the health care system itself if we are going to work toward equity,” Nong said.

What types of discrimination does your paper look at?

This paper specifically examines reported experiences of interpersonal discrimination in the health care system. In order to understand how people experience this kind of discrimination in the health care system, we adapted the Williams Major Experiences of Discrimination measures to ask about discrimination based on the following: 

• education or income level
• physical disability
• sexual orientation
• shade of skin color
• ancestry or national origin

We also included speaking English as a second language and identified additional types of discrimination, including discrimination based on drug use or medications, mental health status, insurance status or health finances, provider attitude or behavior, and lifestyle. Our final analysis included a total of 18 different types of discrimination.

What are some examples of consequences due to health care discrimination? 

A large body of literature gives us important information about the downstream consequences of experiences of discrimination broadly. A smaller subset of this literature examines the downstream effects of discrimination in the health care system specifically. Prior work has identified that people experiencing discrimination are less likely to receive preventive care, utilize mental health services, and trust the health care system, which contributes to poorer health outcomes in these populations. There are many additional opportunities for future research here. We see our work as one contribution to the future analysis of relationships between experiences of discrimination in the health care system and other health outcomes. 

Did you encounter any surprising findings in your research?

First, we were surprised by how frequently healthcare-specific types of discrimination were reported as free-text responses (4 types, reported by 90 respondents). For example, 21 respondents described discrimination based on their health insurance type or status and 18 respondents wrote in descriptions of being discriminated against because of particular medications or drug use. We think these additional categories not captured in other surveys are a contribution to future measurement of discrimination in the health care system specifically.

How can health care systems and professionals address discrimination in this setting?

Health care systems can start by systematically collecting information about experiences of discrimination among their patients. This kind of analysis is critical to building effective responses. Health care systems and professionals must first recognize the prevalence of experiences of discrimination and also the many different types of discrimination patients are experiencing, based on social identities like race or gender, and, based on other characteristics like mental health status or weight.

What do you want people to take away after reading this research?

We hope that people understand that interpersonal discrimination in the health care system is a major justice issue. Our estimate is that 21% of non-institutionalized, English-speaking US adults have experienced discrimination while seeking medical care. Racial discrimination is the most common type of discrimination and serious effort needs to be dedicated to to combating racism in health care.

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Discrimination in Healthcare, Related Factors and Outcomes: A Systematic Review

• University of Social Welfare and Rehabilitation Sciences

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Ending discrimination in health care settings

Jim Campbell, Director, WHO Health Workforce Department Gottfried Hirnschall, Director, WHO Department of HIV and Global Hepatitis Programme Veronica Magar, Team leader, WHO Gender, Equity and Human Rights Mainstreaming Team

It's a sad reality that discrimination in health care is widespread across the world and takes many forms. It violates the most fundamental human rights and affects both users of health services and health workers, based on issues including ethnicity, sexual orientation, harmful gender stereotypes, asylum and migration status, criminal record, and other prejudices and practices.

Discrimination runs counter to global commitments to reach universal health coverage and the Sustainable Development Goals. It undermines investment in health systems, deters people from accessing or seeking health services, divides, disempowers, and deprives people of their basic dignity.

Discrimination runs counter to global commitments to reach universal health coverage and the Sustainable Development Goals.

Discrimination also affects the social determinants of health. For many people, their interaction with the health system is their only connection to a state institution, directly shaping their very experience of citizenship and all too often, serving to reinforce their exclusion from society.

The Joint UN Statement on ending discrimination in health care settings, launched by former WHO Director-General Margaret Chan and UNAIDS Executive Director Michel Sidibé, and endorsed by the heads of agencies at ILO, IOM, OHCHR, UNDP, UNESCO, UNFPA, UNHCR, UNICEF, UNWOMEN, and WFP, calls on partners to commit to ending discrimination in health care settings through joint and coordinated action.

• Joint United Nations statement on ending discrimination in health care settings

The statement lays out three priorities:  

• Discrimination does not occur in a vacuum. Health workers and their own rights are at the centre of this agenda – with labour rights, working conditions and gender inequalities inextricably tied to addressing discrimination in health care settings and a health work force that is largely female. We must move beyond the single narrative – by which health workers are perpetrators of discrimination – to recognize the importance of supporting health workers not only to fulfil their roles and responsibilities, but also to claim their rights.
• A strong evidence base coupled with robust legal frameworks are critical to advancing accountability for discrimination in health care. And yet laws very often contradict the evidence base. We must work to bring laws into line with established public health evidence and human rights standards.
• The need to address the underlying causes of discrimination within and beyond the health system. This can only be achieved by working across sectors, agencies and more actively engaging with civil society organizations representing both health workers and affected communities. Governments, agencies and community leaders must unite in declaring discrimination in healthcare unacceptable.

In February 2017, nine countries launched a new network to promote quality, equity and dignity in health care, and to promote cross-country exchange and planning around quality of care. The network is driving efforts across the countries to promote quality of care, especially for mothers in marginalised communities, and generating important lessons for other countries battling high rates of newborn mortality.  

While many partners within and beyond WHO are already working on addressing discrimination in health care settings, this agenda seeks to reconcile these efforts behind a common agenda. As we continue to advance towards universal health coverage, discrimination will be an important frontier issue requiring a holistic and united response.

In taking up this call, the Fourth Global Forum on Human Resources for Health, in November 2017, offers an opportunity to take this agenda forward, and to better elaborate the rights, roles and responsibilities of health workers. We hope you will join us in moving ahead with this shared vision for a world free from discrimination in healthcare.

• Fourth Global Forum on Human Resources for Health: Building the health workforce of the future

James Campbell

Director Health Workforce Department WHO

Gottfried Hirnschall

Director Department of HIV and Global Hepatitis Programme WHO

Dr Veronica Magar

Team leader Gender, Equity and Human Rights Mainstreaming Team WHO

• Global Health Workforce Alliance
• Gender, equity, human rights

• Open access
• Published: 16 May 2022

Racism in healthcare: a scoping review

• Sarah Hamed 1   na1 ,
• Hannah Bradby 1   na1 ,
• Beth Maina Ahlberg 1 , 2   na1 &
• Suruchi Thapar-Björkert 3   na1  

BMC Public Health volume  22 , Article number:  988 ( 2022 ) Cite this article

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Racism constitutes a barrier towards achieving equitable healthcare as documented in research showing unequal processes of delivering, accessing, and receiving healthcare across countries and healthcare indicators. This review summarizes studies examining how racism is discussed and produced in the process of delivering, accessing and receiving healthcare across various national contexts.

The PRISMA guidelines for scoping reviews were followed and databases were searched for peer reviewed empirical articles in English across national contexts. No starting date limitation was applied for this review. The end date was December 1, 2020. The review scoped 213 articles. The results were summarized, coded and thematically categorized in regards to the aim.

The review yielded the following categories: healthcare users’ experiences of racism in healthcare; healthcare staff’s experiences of racism; healthcare staff’s racial attitudes and beliefs; effects of racism in healthcare on various treatment choices; healthcare staff’s reflections on racism in healthcare and; antiracist training in healthcare. Racialized minorities experience inadequate healthcare and being dismissed in healthcare interactions. Experiences of racism are associated with lack of trust and delay in seeking healthcare. Racialized minority healthcare staff experience racism in their workplace from healthcare users and colleagues and lack of organizational support in managing racism. Research on healthcare staff’s racial attitudes and beliefs demonstrate a range of negative stereotypes regarding racialized minority healthcare users who are viewed as difficult. Research on implicit racial bias illustrates that healthcare staff exhibit racial bias in favor of majority group. Healthcare staff’s racial bias may influence medical decisions negatively. Studies examining healthcare staff’s reflections on racism and antiracist training show that healthcare staff tend to construct healthcare as impartial and that healthcare staff do not readily discuss racism in their workplace.

Conclusions

The USA dominates the research. It is imperative that research covers other geo-political contexts. Research on racism in healthcare is mainly descriptive, atheoretical, uses racial categories uncritically and tends to ignore racialization processes making it difficult to conceptualize racism. Sociological research on racism could inform research on racism as it theoretically explains racism’s structural embeddedness, which could aid in tackling racism to provide good quality care.

Peer Review reports

This scoping review summarizes studies that look at how racism is discussed and produced in the process of delivering, accessing and receiving healthcare. Racism can be defined as a form of social formation embedded within a network of social, economic, and political entities in which groups of people are categorized and hierarchically ordered through a historical process of racialization [ 1 ]. Groups of people who are racialized as inferior, henceforth referred to as racialized minorities, are devalued, disempowered, and subjected to differential treatment in various institutions, including healthcare, resulting in negative material consequences affecting people’s living conditions, everyday lives, including access to healthcare and health outcomes [ 2 ]. We use the term minority herein to indicate groups of people who are minoritized as they are subjected to unequal power relations. Racism is a dynamic historical process that continuously undergoes change and finds new forms of political, social, cultural, or linguistic expressions [ 3 ]. In contrast to the official, recognized institutionalized racism that existed in most Western settings prior to the Second World War, contemporary racism persists through more normalized covert or invisible processes rather than explicit expressions of racism [ 4 ]. These processes operate at multiple interrelated levels, ranging from the individual to the structural within existing structures [ 5 ].

In healthcare, as in other institutions, racism continues to persist and constitutes a major barrier towards achieving equitable and responsive healthcare. This is documented by research showing differential and unequal processes of delivering, accessing, and receiving healthcare across various countries and healthcare indicators [ 2 , 6 ] including diabetes care [ 7 ], mental healthcare [ 8 ], maternal healthcare [ 9 ], preventive vaccination [ 10 ], end-of-life care [ 11 ], cardiology care [ 12 ] and pain management [ 13 ]. Research has also documented that racialized minorities not only receive inadequate quality healthcare but are also viewed as less desirable healthcare users compared to majority groups [ 14 ]. A systematic scoping review of studies looking at healthcare users’ perspectives on racism in healthcare shows that racialized minority healthcare users are alienated due to racism and lack of empathy resulting in inadequate healthcare [ 15 ]. A meta-analysis [ 16 ] also shows that healthcare users who experience racism have higher odds of reporting lower trust in healthcare, lower satisfaction with care, and perceived quality of care. Meta-analysis reviews [ 17 , 18 , 19 ], as well as a scoping review of both qualitative and quantitative studies [ 20 ], show that healthcare staff produce racism unconsciously as they exhibit implicit racial bias, i.e., negative attitudes and stereotypes against racialized minorities relative to majority groups within the context of healthcare.

Although the volume of scientific research on the various ways racism affects healthcare has grown steadily [ 2 ], racism and its damaging effect on the livelihood and health of racialized minorities [ 21 , 22 , 23 ] persists and consequently constitute an injustice that needs to be addressed. Some systematic meta-analyses and scoping reviews regarding various dimensions of racism in healthcare have been conducted. These have examined evidence involving healthcare staff’s implicit racial bias [ 17 , 18 , 19 , 20 ], antiracist interventions in healthcare [ 24 ], healthcare users’ utilization of care [ 16 ], public health understanding of racism in healthcare [ 25 ], as well as other topics [ 26 ]. The importance of these reviews notwithstanding, these reviews focus on specific dimensions pertaining to racism in healthcare and hence do not examine the full extent of the existing evidence on racism in healthcare. We argue that to understand how racism is produced in healthcare, given that racism is a complex social formation that is embedded in structures of modern societies, a full overview of the various operative dimensions of racism is needed. Put in other words, focusing on racism as the object of research instead of specific topics, offers an in-depth understanding of the complex nature of racism that is not amenable to a more health topic specific review. To our knowledge, there have not been any reviews that have examined all empirical evidence on the topic of racism in healthcare. Conducting such a review is important in order to incorporate the growing number of articles on persistence of racism in healthcare. This calls for a description of the content of the studies in order to a) gain an overall comprehensive insight into what has been conducted regarding the various dimensions of racism in healthcare; b) through acquiring an overall picture of the research, identify existing knowledge gaps in the research that might aid researchers in explaining what further research is needed that can explain why racism continues to persist in healthcare. Since the topic of racism in healthcare extends over several disciplines and research methodologies [ 2 ], and in order to capture an overview of both the qualitative and quantitative research, we conducted a scoping review. Scoping reviews describe the characteristics of research, scope a body of literature, especially when a body of literature has not been comprehensively reviewed or when the literature is scattered and heterogeneous [ 27 ] as in the case of the topic herein. Noteworthy, is that we do not aim in this review to evaluate the strength of evidence of the reviewed articles, nor do we aim to evaluate the methodological rigor of the reviewed articles as is usually the case in meta-analyses. Rather, as delineated, the aim here is to describe the content of the research available on racism in healthcare and to identify existing knowledge gaps.

Before the material and methods of this scoping review are presented, a short note on terminologies used in this review is warranted. As this review includes articles from various national contexts, variations in what constitutes healthcare in these contexts exist. Therefore, for the purpose of this review, healthcare is defined as including health and dental care including medical and dental educational settings and elderly care but excludes military veteran care. Consequently healthcare staff are defined as a broad range of staff including nurses, dentists, midwives, physicians as well as other stakeholders related to the field of healthcare such as nursing aids and care givers. Healthcare users in this review are defined as all individuals who used the healthcare system as per the definition provided i.e., including medical and dental care. The review thus examines articles that look at how racism is discussed and produced in the process of delivering, accessing and receiving healthcare and not articles that look at the effects of racism on health outcomes or health status. The review therefore, aims to map all articles that focus on how racism is discussed and produced in healthcare including differential treatment due to racism, how racism affects healthcare interactions, experiences of racism and antiracist interventions as well as other aspects revealed by the review.

A wide variety of definitions exist in the literature concerning how to describe groups of people who are subjected to racism depending on the national contexts and on whether racial categories exist as legal categories in a given context. As an example, in the USA racial categories such as Black and White exist as legal categories while in many other European contexts, these categories are illegal [ 28 ]. In this review, and building on arguments made by Fanon [ 29 ] and Miles [ 30 ] on the importance of focusing on the process of racialization rather than ‘race’, the terms racialized minorities and majority groups are used to describe healthcare staff and users belonging to dominated and dominant groups. We use the term racialized minority to specify groups of people who are numerically a minority but who are also racialized as inferior in comparison to the majority groups and are thus subject to differential and unequal power relations and treatment in various institutional contexts. Although, we use the term racialized minority and majority in this review, the reviewed articles used a variety of different terminologies to indicate different ethnic groups. When results are reported from the reviewed articles in the Result section of this scoping review, we will use the terms that are used in the reviewed articles. Terms such as Black and White which indicate racial categories produced by historical racialization processes will be capitalized to indicate that they are social constructs. These terms are viewed as social constructs and they will be used if they are cited in the articles being reviewed when describing results. The use of these racial categories in the reviewed articles will be problematized in the Discussion section.

Materials and methods

A scoping review has been conducted to examine the empirical qualitative, quantitative and mixed method studies on racism in healthcare and to identify any research and knowledge gaps. For this scoping review, we followed the published PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analysis) extension for scoping reviews (PRISMA-ScR) [ 31 ] to define the context and the concepts, to search, formulate inclusion criteria, extract and chart data in flow charts.

This scoping review aims to answer the following research questions:

What is the content of studies that examine racism in healthcare? In other words, what do the studies tell us about racism in healthcare , including all aspects of racism in healthcare, as described in the introduction?

What are the existing research and knowledge gaps that current studies do not address in relation to racism in healthcare that may be useful in a) understanding how racism is produced in healthcare and b) how racism persists in healthcare.

Search strategy

Following the PRSIMA methodology, the search was conducted according to the following timeframe, databases and search terms:

Time frame : No starting date limitation was applied for this review but the end date was December 1, 2020 to allow the authors enough time to review the selected articles.

Data bases : the following databases and electronic journal collections were searched for English language studies: PubMed, PsycInfo, ASSIA and Scopus. These databases were chosen for being relevant for healthcare research (PubMed and PsycInfo); or multidisciplinary broad databases (Scopus) that cover all subject areas and are keywords databases; or databases that cover research on racism in healthcare in sociological research (ASSIA).

Search terms : The following search terms were used: Topic (racism* or racial* or racialization* or racialisation* or “racial bias” or discrimination* or “structural racism” or “structural discrimination” or “institutional discrimination” or “institutional racism” AND TOPIC: “healthcare”, “dental care”, “healthcare staff”, “healthcare professionals”, “healthcare providers”, “healthcare users”, “patients”. The choice of search terms used in this scoping review was conducted in consultation with an acadmic librarian specializing in public health research. After consultation with the librarian terms such as stereotypes, prejudice, culture and ethnicity were not included as search terms in this review as these terms do not necessarily reflect racism in healthcare and could result from other practices. Additionally, this scoping review is broad and including even broader search terms would result in a magnitude of results that would not necessarily have to do with racism so a decision was made by the authors to limit the search terms of this review. As this might have limited some results, this limitation will be presented in the discussion section.

Inclusion and exclusion criteria

Research papers in languages other than English were excluded. Only peer reviewed articles with empirical data were included. All literature reviews, conceptual and theoretical articles were excluded and no grey literature was included in this review. Studies of any design (qualitative, quantitative as well as mixed method studies i.e., studies that use both qualitative and quantitative methodology) that looked at racism in healthcare as per the explanation provided in the aim and definition of what constitutes racism in healthcare were included. All articles concerning the effects of racism on health status, racial health disparities and differential health outcomes were excluded from this study as this review is on racism in healthcare and not racial differences in health outcomes.

Data extraction and coding

The initial search was conducted using the selected search terms in the chosen databases. When the initial search was conducted, the search was limited to the selected date but also to English language, peer empirical reviewed articles as well as to articles that had full texts provided by our university library. As an example, using the search terms with its various iterations in the database ASSIA, generated 3149 initial hits (English peer reviewed articles with full texts). All the initial search hits from all databases were then collected in one file. The total number of articles from all databases after the initial search was 8312. Excel 2016 spreadsheet and Zotero software were used to store, organize and code the data. Duplicates were then removed and all remaining articles’ titles and abstracts were reviewed. The results are shown in the PRISMA flow chart in Fig.  1 .

PRISMA diagram of the study selection process

Two reviewers screened all titles and abstracts to assess eligibility for inclusion. Articles were excluded based on the exclusion and inclusion criteria (remaining n  = 639). All articles which included the search terms in their title and/or abstract were included in this stage. If it was unclear whether the article should be included or in case an abstract did not exist, the decision was made to include or exclude after reading the full article in question and after a discussion with all reviewers was conducted.

In the next stage, the full text of all of the articles that were selected were read and screened by two reviewers. Once the final set of articles were selected based on their relevance to the research question, articles were coded and categorized using Excel 2016 (remaining n  = 213). All reviewers were involved in the coding process (see Fig.  1 and the PRSIMA checklist in additional file 1 ).

Data were summarized by year of publication, geographical location, aim of article, methods and key findings in relation to racism in healthcare. These summaries of all 213 articles are illustrated in additional file 2 . If the method was not clearly stated in the reviewed article, this was reported in the table as unclear method section. However, this review will not look further into the methodology of the articles as it does not fall into the aim of the review. Since the aim of this scoping review is to give an overview of the content of the reviewed studies in relation to the various dimensions of racism in healthcare, the data were coded based on the key findings in relation to the topic herein. All authors discussed the coding of the data and consequently it was decided that the data would be classified into the categories illustrated in Fig.  2 below:

Diagram of categories and sub-categories of the result section

Given that this review reports on findings from 213 articles, it is not possible to set out all the results of every article included. However, additional file 2 gives a summary of the main results in relation to racism in healthcare in all 213 articles that were scoped. The result sections starts with a short description of the main, general findings of the articles. This will be followed by an illustration of the categories and subcategories as demonstrated in Fig.  2 .

Descriptive findings: characteristics of articles included

The oldest article included in the review was from 2001, which means that no article (found through the search process of this review and which met the inclusion criteria) was published prior to that date. From 2005, an increase in the number of published articles on racism is observed (Fig.  3 ), which indicates an increased academic interest in the subject. A sharp increase in the number of articles published per year was observed in 2019 and 2020 with an increase of 65% from 2018 to 2019.

Number of empirical articles on racism in healthcare published per year

Some of the general characteristics of the reviewed articles are described in Table 1 below including type of methodlogy, focus on racism and country of research.

Below we illustrate the various categories and subcategories that resulted from our coding. Under each category descriptive general characteristics of each category is illustrated, followed by a description of the important content of the included article. Noteworthy, is that some articles are included in more than one category. Moroever, since this review has scoped a large number of articles, generating a lengthy result section, a summary diagram of the important results from the various categories is included in Fig.  4 below.

Summary diagram of the various categories of the result section

Healthcare users’ experiences of racism in healthcare

This section describes the content of articles that report on experiences of racialized minority healthcare users’ experiences of racism in healthcare including both their perceived racism in healthcare encounters as well as their reactions to racism. The section starts by giving some general descriptive characteristics of these studies followed by an overview of their important content.

Of the 213 articles in this scoping review, 117 articles examine healthcare users’ experiences of racism in healthcare. Of these 69 are qualitative studies, 41 are quantitative and 7 use mixed methods. These include articles that have racism as their main focus as well as articles that do not have racism as their main focus and only report on racism in their abstract and result section.

Most of the articles that have racism as their main focus report on healthcare users’ experiences of racism in healthcare in general in a variety of contexts i.e., these articles do not look at specific healthcare settings or experiences related to specific treatments or illnesses. These include both qualitative articles [ 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 ] and quantitative studies [ 10 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 ] and two mixed method studies [ 50 , 63 , 64 ].

Various national contexts are represented including the USA [ 32 , 33 , 37 , 38 , 39 , 40 , 41 , 43 , 46 , 47 , 48 , 52 , 54 , 58 , 59 , 65 ]. Other articles are from Brazil [ 34 ], multi-European settings [ 36 ], Mexico [ 35 ], New Zealand [ 49 ], Canada [ 51 ] and France [ 57 ]. All the articles from outside the USA are qualitative articles except for the article from France.

Other articles examine experiences of racism within specific illnesses or healthcare contexts. These include qualitative articles looking at hypertension care in the USA [ 66 ], decision making processes in diabetes care in the USA [ 67 ], depression care in USA [ 68 ], HIV-care in USA [ 69 , 70 , 71 , 72 ], mental care in USA [ 73 ], cardiovascular disease care in USA [ 74 ], reproductive, maternal and perinatal healthcare in USA [ 75 , 76 , 77 , 78 ], and chronic renal failure care in Brazil [ 79 ]. Quantitative articles examine how experiences of racism in HIV-care [ 80 , 81 ], sickle cell disease management in the USA [ 82 ] mental healthcare in UK [ 83 ] and in USA [ 8 , 84 ], diabetes care in USA [ 85 , 86 , 87 , 88 , 89 ], dental care in the USA [ 90 , 91 ] and maternal care in USA [ 92 ]. Two studies employ a mixed methodology and look at mental care [ 93 ], pain management [ 94 ], and heart failure therapy; all in USA [ 95 ].

Some of the articles that do not have racism as their main focus set out to examine experiences, perceptions, facilitators and barriers of racialized minority healthcare users’ with healthcare and healthcare encounters in various contexts, mostly outside of the USA. These include reports of racism in healthcare encounters in Canada [ 96 , 97 , 98 , 99 , 100 , 101 ], Australia [ 64 , 102 ], the UK [ 103 , 104 ], USA [ 105 , 106 , 107 , 108 ], India [ 109 ], Belgium [ 110 ], Malaysia [ 111 ], Spain [ 112 ] and Israel [ 113 ]. All of these articles use qualitative method except one article from the USA [ 105 ], and one mixed method article also from the USA [ 107 ].

Articles that do not have racism as their main focus and look at specific healthcare contexts or indicators examine the following: trust in healthcare in the USA [ 114 ], trust in physicians in the USA [ 115 ], experiences of chronic illness in Australia [ 116 ], burn injury in pediatric care in Australia [ 117 ], pediatric acute care in Canada [ 118 ], acute care in Australia [ 119 ], end of life care in the USA [ 120 ], mental healthcare [ 121 ] in the USA [ 122 ], reproductive, maternal and perinatal care in the USA [ 123 , 124 , 125 , 126 , 127 , 128 ], in Australia [ 129 ] and Canada [ 130 ], cancer care in the USA [ 131 , 132 , 133 ] and the UK [ 134 ], dental care in the USA [ 135 ], diabetes care in the USA [ 7 , 136 ], sexual healthcare in the USA [ 137 ], and finally perceptions of patient centered care in the USA [ 138 ]. The majority of these articles are qualitative except for 5 articles [ 7 , 114 , 115 , 129 , 133 , 139 ] as well as one mixed method article [ 121 ].

Racialized minority healthcare users examined in the reviewed articles

Studies focusing on specific racialized minorities examine mostly experiences of African Americans/Blacks in USA ( n  = 28) [ 7 , 32 , 33 , 38 , 39 , 43 , 45 , 53 , 55 , 65 , 67 , 69 , 71 , 72 , 75 , 77 , 78 , 81 , 82 , 83 , 93 , 115 , 120 , 122 , 127 , 131 , 140 , 141 ]. Other studies in the USA look at Hispanics ( n  = 10), [ 47 , 52 , 54 , 107 , 108 , 121 , 135 , 136 , 137 , 138 ], American Indians [ 48 , 85 , 106 ], as well as other ethnicities such as Asian Americans [ 54 , 114 ].

Other studies look at experiences of Indigenous people outside of USA ( n  = 16) [ 35 , 51 , 64 , 64 , 78 , 96 , 97 , 98 , 99 , 100 , 101 , 102 , 117 , 118 , 129 , 130 ], Pakistani Muslims [ 103 ] and Sub-Saharan Africans [ 112 , 113 ]. Some studies do not specify a minority category and use terms such as People of Color [ 37 , 123 , 124 , 125 , 126 ], migrants/refugees [ 36 , 57 , 104 , 110 ] and minorities [ 56 , 58 , 63 ].

Report of healthcare users’ encounters with racism in healthcare

Quantitative studies looking at reports of racism in healthcare that include both majority and racialized minorities (mostly African Americans) show that racialized minorities are more likely to report experiences of perceived racism and inadequate healthcare, compared to majority groups in various contexts such as in the USA [ 10 , 46 , 52 , 58 , 59 , 80 , 87 , 142 ], New Zealand [ 49 ], and France [ 57 ]. These experiences of discrimination are reported in connection to mental healthcare in the USA [ 8 ].

Racialized minority healthcare users report being subjected to both overt and covert racism in healthcare interactions from healthcare staff in a number of studies. For example, qualitative studies from USA report that African American women report the use of racial slurs by healthcare staff [ 99 , 127 ] as do Aboriginal women in Canada [ 101 ]. Racialised minority healthcare users also report being reprimanded in a way that felt unjustified and scolded by healthcare staff such as reported by African American women in the USA [ 33 ]. One study in the UK [ 143 ] also reports that experiences of racism in healthcare by racialized minorities (Pakistani community) is seen as a disruption of the principles of solidarity and equity of healthcare.

The reviewed articles report that racism is experienced in different ways. These include negative assumptions from healthcare staff towards racialized minority healthcare users. As an example qualitative studies show that African American healthcare users report that they perceive experiences of racism as avoidance of touch by healthcare staff [ 141 ], exclusion from decision making processes in healthcare interactions [ 7 , 39 , 67 ] as well as lack of respect [ 135 ]. Being scolded, treated rudely and with apathy by healthcare staff is reported in a number of qualitative studies e.g. by Hispanics and Latinas in USA [ 137 , 138 ] and women of color also in USA [ 126 ]. Moreover, racialized minority healthcare users in other contexts outside of USA also share the same perceptions of being left out of decision making processes as well as being dismissed and discarded. For instance qualitative studies looking at people of non-European migrants in Sweden, Portugal and Germany [ 36 ] as well as in Belgium [ 110 ] report that these healthcare users feel that their symptoms and complaints are not taken seriously by healthcare staff. First Nation and Indigenous healthcare users in Canada [ 96 , 100 ] and Indigenous people in Kerala India [ 109 ] also report being trivialized in healthcare encounters as demonstrated in qualitative studies.

Some of the qualitative studies that explore experiences of e.g. African Americans [ 40 , 122 , 128 ] and Aboriginals in Canada [ 101 ] also report that these groups perceive racism as institutional and connected to historical racism of their respective countries. Racism in healthcare is described as connected to the historical trajectories of colonialism, and connected to the historical struggle of minorities against racism and colonial structures [ 40 , 101 , 128 ]. Racism is moreover viewed as a common experience throughout their everyday interactions both in healthcare and outside [ 122 ].

Reports on healthcare users’ reactions to racism in healthcare

Qualitative studies show that experiences of racism by various racialized minority healthcare users are linked with feelings of frustration, sorrow, dismay and feeling insignificant as reported by e.g. Aboriginals in Australia [ 116 ] and African Americans [ 33 , 68 ]. The qualitative studies also show that racialized minority healthcare users avoid seeking healthcare due to experiences of racism in healthcare services. For instance, in Spain and Brazil, Sub-Saharan African healthcare users and various other racialized minorities similarly report being afraid of the healthcare system due to experiences of racism in healthcare [ 34 , 112 ] which may lead to healthcare users  preferring healthcare staff of the same ethnicity as themselves [ 76 , 123 ]. Preference for healthcare staff of the same ethnicity as a result of experiences of racism by racialized minorities was also shown in a quantitative study from the USA [ 53 ].

As racialized healthcare users emphasize the role of trust and equality in healthcare [ 71 , 134 , 140 ], mistrust in healthcare staff [ 66 , 115 ] and healthcare [ 69 , 120 ] is a common reaction from healthcare users who experience racism. Quantitative studies from USA show that perceived racism is inversely associated with trust in healthcare staff and positively related to distrust in healthcare [ 45 , 55 , 114 ]. Quantitative studies also show that racism in healthcare experienced by racialized minorities is associated with higher levels of unmet needs, lower satisfaction with care as shown by a study from New Zealand [ 49 ] and another from Canada [ 51 ]. Additionally, the experience of racism in healthcare is associated with lower medication adherence in mental health illness in UK [ 83 ], increased likelihood of delaying both cholesterol screening visits [ 55 ] and dental exams in USA [ 91 ]. Moreover, other studies from USA show that the experience of racism in healthcare is also associated with an increased number of teeth lost among healthcare users [ 90 ], worse diabetes care [ 89 ] as well as avoiding initiating the process of kidney transplant evaluation [ 139 ]. However, perceived racism in healthcare in the USA, as shown in two study [ 85 , 87 ] is not associated with lower frequency of the uptake of services for diabetes [ 85 ] and of diabetes medications for hyperglycemia [ 87 ].

Various coping mechanisms used by healthcare users were reported in the reviewed articles. Qualitative studies show that in USA, African American women use religious faith and the church to deal with racism in healthcare [ 120 ]. African American healthcare users also report acting assertively [ 33 , 39 ] and employing respectability tactics (making providers aware of their social status, educational background etc.) to convince healthcare staff to take them seriously [ 39 , 144 ]. African American women also describe conducting research on their illness as well as dressing well for consultations, taking initiatives and asking healthcare staff questions so as to be perceived as knowledgeable [ 115 ]. The importance of family and peer support is also reported as a way of coping with racism in healthcare. Other strategies such as recruiting healthcare staff from the same ethnicity is discussed by African Americans [ 116 ] as well as People of Color in general in USA [ 37 ].

Healthcare staff’s experiences of racism in healthcare

Twenty-seven articles explore racialized minority healthcare staff’s experience of racism in their workplace [ 50 , 145 , 146 , 147 , 148 , 149 , 150 , 151 , 152 , 153 , 154 , 155 , 156 , 157 , 158 , 159 , 160 , 161 , 162 , 163 , 164 , 165 , 166 , 167 , 168 , 169 , 170 ]. Most of these article set out to examine healthcare staff’s experiences of racism, except for two articles that look at healthcare staff’s mental health issues in the workplace in USA [ 147 ], career progression [ 150 , 151 ] and quality of healthcare provided to migrant elderly care residents [ 171 ].

All these studies were qualitative studies except for 4 quantitative studies [ 150 , 154 , 164 , 168 ] and one mixed study [ 166 ]. Of these studies 7 studies explore experiences of racialized minority healthcare staff in USA [ 147 , 148 , 149 , 150 , 152 , 158 , 161 , 162 , 165 , 166 , 168 , 169 , 170 ]. Other studies look at experiences of racialized minority healthcare staff in various national contexts including UK [ 145 , 159 , 160 , 167 ], New Zealand [ 152 , 164 , 171 ], Canada [ 153 , 163 ], Israel [ 50 , 156 ], Finland [ 154 , 168 ] and Sweden [ 155 ].

Racialized minority healthcare staff examined in the reviewed articles

These articles looked at a variety of minority groups. These included as reported by the articles, Blacks/African Americans in the USA [ 147 , 148 , 165 , 169 , 170 ], Blacks in UK [ 160 ] and Canada [ 163 ], overseas and immigrant healthcare staff in the UK [ 145 , 159 , 167 ], in Canada [ 153 ], Finland [ 154 , 167 ] and Sweden [ 155 ]. Healthcare staff of Color are examined in the USA [ 146 , 149 , 166 ] as well as Hispanic in the USA [ 162 ], Filipina in the USA [ 161 ], Arabs in Israel [ 156 , 172 ], Maori and Asian Pacific in New Zealand [ 164 ] and a combination of various racialized minorities  in New Zealand [ 152 ] and the USA [ 151 ].

Categories of healthcare staff examined in the reviewed articles

The reviewed articles examine different categories of healthcare staff. However, most examine nurses’ experiences of racism in healthcare [ 145 , 149 , 152 , 153 , 159 , 160 , 161 , 162 , 168 , 169 ]. Others examine both physicians and nurses [ 50 , 156 , 165 , 170 ], physicians [ 154 , 163 , 166 ], medical settings’ members [ 147 , 148 ], care workers [ 155 , 158 , 164 , 167 , 171 ], and oral maxillofacial surgeons [ 150 ].

Reports of healthcare staff’s experiences of racism in healthcare

Racialized minority healthcare staff describe incidents of racism by other staff members [ 150 , 154 , 162 , 167 , 170 ]. As an example, a study of immigrant physicians from Finland [ 154 ] and another of immigrant nurses from the UK [ 167 ] demonstrate that healthcare staff report being bullied by other healthcare staff in the workplace. Another study of African American nurses in the USA, report that these nurses demonstrate feelings of mistrust towards other healthcare staff due to experiences of racism [ 169 ] and discuss experiencing both overt and covert racism in the workplace. In Israel, blatant racism is experienced by nurses from healthcare users who refuse to be treated by Arab nurses with reports of both verbal and physical violence from healthcare users [ 156 ].

Nurses of color in the USA report undertaking excessive emotional labor and experiencing depletion due to racism from healthcare users [ 149 ]. Navigating racism in medical education in the USA is also reported to entail immense emotional labor [ 147 ]. In medical educational settings, medical students of racialized minorities in the UK report difficulties in navigating racism, which had an effect on their mental health. Feelings of racism in healthcare led to stress and mental health issues as reported by a study of immigrant nurses in Canada [ 153 ]. One study conducted in both the USA and New Zealand, report that racialized minority nurses suppress their ethnic identities in order to navigate their workplace due to lack of awareness by other nurses on issues of racism [ 152 ].

One study from Canada shows that when complaining about issues of racism to managers, nurses are framed as trouble-makers and their complaints are dismissed [ 153 ]. Lack of support from managers is also described in the USA by care workers [ 158 ] and in one case, majority nurses in the USA and New Zealand report they were punished for supporting racialized minority nurses who encountered racism [ 152 ]. As a consequence of the difficulties in reporting racism, some studies report that healthcare staff have to tolerate racism from healthcare users. As an example a study from the USA looking at Hispanic nurses experiences of racism [ 162 ], a study from New Zealand of migrant nurses [ 171 ] and a study of immigrant care workers in Sweden [ 155 ] report that these healthcare staff are expected to tolerate and absorb racism from healthcare users as the latter are sick and vulnerable. Moreover, Black nurses in the USA report having lost confidence in their abilities [ 160 ] since they are told that they are not good enough for their job. Experiences of exclusion from clinical teams and loss of job opportunities is also reported by overseas nurses in the USA [ 145 ].

Healthcare staff’s racial attitudes and beliefs

This category includes 33 articles, made up of 12 qualitative, 20 quantitative and one mixed method studies. A number of qualitative articles in various national contexts explore healthcare staff racial attitudes and beliefs. These include qualitative analyses that examine healthcare staff’s beliefs and perceptions in regards to various racialized minorities as well as quantitative analyses that examine healthcare staff’s implicit racial bias.

Qualitative articles that examine beliefs and perceptions of healthcare staff in regards to racialized minorities are all articles that have not primarily set out to examine racism. These articles mainly explore how healthcare staff perceive interactions with Roma people in Slovakia [ 173 ], Spain [ 174 ], Romania [ 175 ] and in multi-European contexts [ 176 ]. Moreover, these studies look at American Indians in the USA [ 106 ], African American women in the USA [ 177 ], Micronesian women in Hawai ‘i in the USA [ 178 ], Indigenous people in Australia [ 179 ], Asians in the UK [ 180 , 181 ] as well as racialized minorities in general in Belgium [ 182 ], in Ireland [ 183 ] and in France [ 14 ].

A number of quantitative articles describe healthcare staff’s racial bias in healthcare encounters [ 61 , 184 , 185 , 186 , 187 , 188 , 189 , 190 , 191 , 192 , 193 , 194 , 195 , 196 , 197 , 198 , 199 , 200 , 201 , 202 ]. All of these articles are conducted in the USA except for one article from France [ 197 ], and two from New Zealand [ 187 , 192 ]. A variety of categories of healthcare staff are examined in these articles including surgeons [ 191 ], pediatrians [ 195 , 196 ], physicians [ 61 , 188 , 189 , 193 , 198 , 200 ], medical students [ 185 , 186 , 187 , 192 ], nurses [ 191 ], and various other categories of staff [ 184 , 197 , 199 , 202 ].

Reports of healthcare staff’s racial attitudes and beliefs

Qualitative studies suggest there is a tendency to homogenize racialized minorities [ 174 , 181 , 183 ]. In the USA, Black men are judged as uneducated and less reliable by both White and Black healthcare staff [ 13 ]. In the UK, a study found that majority healthcare staff tend to homogenize racialized minority healthcare users, view Asian minorities as holding irrational religious beliefs, while at the same time denying the existence of racism [ 181 ]. In a study in Spain, healthcare staff have been shown to have negative perceptions towards Roma women subjected to intimate partner violence [ 174 ]. Additionally, in Belgium and France healthcare users belonging to racialized minorities, especially Muslims, are seen as problematic and frustrating [ 14 , 182 ]. A study in Ireland shows that healthcare staff perceive healthcare users from racialized minorities in maternal care as demanding, too emotional and dramatic [ 183 ].

Quantitative studies show that healthcare staff from the USA have implicit racial bias in favor of Whites even when they primarily state that they do not have such bias (e.g. Haider et al., 2014, 2015) [ 190 , 191 ]. A study in the USA shows that implicit racial bias favoring Whites increase at the emergency department when the department is overcrowded with healthcare users [ 194 ]. Yet another study from the USA shows that implicit racial bias increases with increased healthcare staff burnout [ 188 ]. Another study from the USA showed implicit racial bias in favor of Whites healthcare users, both adults and children [ 195 ], while another study, also from the USA shows that female and African American physicians exhibit less implicit racial bias than men and White physicians [ 200 ]. Studies from New Zealand also show that medical students exhibit implicit racial bias in favor of Europeans and against Maori groups [ 187 , 192 ]. Two studies in this review found that French physicians do not exhibit implicit racial bias [ 197 ] and pediatrician residents in the USA exhibit weaker implicit bias in comparison to existing findings for other groups of professionals [ 200 ]. In general, studies found explicit racial bias to be less common than implicit racial bias [ 192 ].

Effects of racism in healthcare on various treatment choices

This category includes 14 articles. All of these articles are from conducted in the USA and are quantitative except one mixed method article [ 95 ]. These articles examine the effect of racism in a variety of treatment choices. These treatment choices include various parts of healthcare including maternal and reproductive healthcare [ 203 , 204 ], pediatric care [ 205 ], cardiovascular diseases [ 12 , 95 ], end of life care [ 11 ], medical decisions in the emergency unit [ 61 ], oncology care [ 206 ] and immunotherapy [ 207 ]. In addition, other articles examine pain management [ 13 , 208 , 209 , 210 ], HIV prophylaxis [ 211 ], atrial fibrillation treatment and dialysis treatment [ 212 ] and admission rate in an emergency unit [ 196 ].

Reports on the effects of racism on treatment choices

According to a quantitative study from the USA, Black women are more likely than White women to receive general anesthesia for cesarean delivery and to receive no analgesia for vaginal delivery [ 204 ]. Another study from the USA also shows that Black and Latinx healthcare users have lower rates of admission to the cardiology service compared to White patients [ 12 ]. Moreover, a study from the USA looking at stroke prevalence and treatment among various ethnicities found that Hispanics and Blacks have the highest risk of stroke in the population but are less likely to be prescribed anticoagulant medications than Whites [ 212 ]. In regards to end of life care, a study from the USA shows that Black healthcare users receive more burdensome end of life care in comparison to White healthcare users [ 11 ].

Another study from the USA that found implicit racial bias towards Whites in the emergency unit also found that implicit racial bias is associated with less serious diagnosis in regards to Black and Hispanic healthcare users when the emergency unit is crowded [ 61 ]. Another study from the USA looking at oncologists found that oncologists who measure high in implicit racial bias have shorter interactions with Black patients [ 206 ].

Moreover, a study from the USA also shows that White male physicians prescribe less pain medications to Black healthcare users compared to White users [ 208 ] and that healthcare professionals perceive Blacks to be biologically different than Whites and thus having differential reactions to pain [ 210 ]. Other studies from the USA also report differential pain management for Black healthcare users [ 13 , 209 ] as well as less likelihood for prescribing HIV prophylaxis treatment for Black healthcare users [ 211 ]. Moreover, another study from the USA shows that African American are less likely to receive treatment with immunotherapy compounds independent of their insurance status [ 207 ]. A study from the USA shows that Newborn–physician racial concordance is associated with a significant improvement in mortality for Black infants and that these positive effects of physician newborn racial concordance manifest strongly in more complicated cases and when hospitals deliver more Black newborn [ 203 ]. Not all studies report differential treatment. For instance one studye from the USA found no racial differences in the admission rate in the emergency unit between various ethnic groups [ 196 ].

Healthcare staff’s reflections on racism in healthcare

There are 15 articles that examine healthcare staff’s reflections on racism in healthcare [ 98 , 155 , 172 , 213 , 214 , 215 , 216 , 217 , 218 , 219 , 220 , 221 , 222 , 223 , 224 ]. All of these articles are qualitative and are conducted in a variety of national contexts including the USA [ 214 , 219 , 222 ], Canada [ 217 , 221 , 224 ], Australia [ 216 , 218 , 220 ], UK [ 213 ], Sweden [ 155 , 215 ], South Africa [ 223 ] and Israel [ 172 ].

Most of the articles examine various categories of healthcare staff. Articles examining specific categories of healthcare staff include articles examining nurses [ 172 , 213 , 215 , 218 ] and care workers [ 155 ]. These articles explore general perceptions of racism in healthcare and do not focus on a specific ethnicity regarding the healthcare staff that are included.

Reports on healthcare staff’s reflections on racism in healthcare

In the UK [ 213 ], Canada [ 217 ], and the USA [ 219 ] studies show that healthcare staff tend to construct themselves as neutral and impartial and have difficulty in accepting that prejudice is part of healthcare interactions [ 213 ]. Similarly a study of nurses and physicians in Israel reports that the interviewed healthcare staff generally frame medicine as rational, neutral and based on objectivity [ 172 ] and that racism is seen as a matter of individual experiences rather than structural. In Sweden, a discrepancy between racialized minority and majority care givers is reported [ 155 ], regarding their views on racism in healthcare. While racialized minority care givers reflected on racism in healthcare, majority healthcare care givers tended to dismiss racism as existing in healthcare interactions. A Canadian study shows that healthcare staff who spent time working with Indigenous people show a more nuanced understanding of Indigenous people’s realities [ 221 ].

Studies from Australia report conflicting perceptions on racism in healthcare. While some studies show that healthcare staff are aware of racism as part of the Australian healthcare system specifically towards aboriginal healthcare users [ 69 , 220 ], another study shows that healthcare staff are unable to define racism and that they often conflate racism with gender discrimination [ 218 ]. A study from the USA demonstrates that healthcare staff thought of ‘race’ as biological rather than a social construct [ 214 ].

Antiracism training in healthcare

This review included 15 studies that evaluated various antiracist training programs and workshops for healthcare staff including students [ 225 , 226 , 227 , 228 , 229 , 230 , 231 , 232 , 233 , 234 , 235 , 236 , 237 , 238 , 239 ]. All articles are from research conducted in the USA except one article from the UK [ 234 ] and 2 from Australia [ 231 , 239 ].

Most of these articles are quantitative ( n  = 7) [ 225 , 226 , 227 , 230 , 233 , 235 , 237 ]. Others used either qualitative methods ( n  = 5) [ 229 , 232 , 234 , 236 , 238 ] or were mixed methods ( n  = 3) [ 228 , 231 , 239 ].

Most of the antiracist training was conducted among medical students [ 225 , 226 , 227 , 233 , 234 , 235 , 239 ]. Other training was conducted in medical settings among faculty members [ 230 , 231 , 237 , 238 ], among nurses [ 232 ], among physicians [ 236 ], and among various groups of healthcare staff [ 228 , 229 ].

Reports on training on antiracism in healthcare

Difficulties in discussing racism in healthcare are reported in most of the studies. A qualitative study from the USA shows that medical faculty members do not discuss racism in healthcare in their workplace [ 238 ] and are uncomfortable about discussing racism. Another qualitative study from the USA illustrates that nurses Whiteness constituted a barrier in regards to teaching about racism in healthcare [ 232 ]. Another qualitative study from the USA also illustrates this difficulty and shows that healthcare staff found that discussions around racism as a structural and persistence issue was polarizing [ 229 ]. Similarly, a qualitative study from the UK demonstrates that there was generally an inadequate awareness of the meaning of multicultural care among medical students [ 234 ]. A quantitative study among various medical students from the USA [ 235 ] shows that students who graduated from an interdisciplinary pre-health curriculum identified relationships between structural factors and health outcomes more than pre-medicine science majors did.

Quantitative studies from the USA evaluating antiracist training show better understanding of racism in healthcare after the intervention [ 235 ], increased confidence and comfort in discussing and addressing racism [ 225 , 227 , 228 , 233 ] and greater interest in receiving more antiracist training (Bi et al., 2020; Perdomo Joanna et al., 2019) [ 226 , 237 ]. Healthcare staff who participate in antiracist interventions exhibit greater empathy towards racialized minorities according to a study in the USA [ 230 ] and one from Australia [ 239 ]. However, the study from Australia shows that while medical students demonstrate somewhat changed perceptions towards Aboriginal people and are more likely to challenge stereotypes, issues around racism were not resolved [ 239 ]. Moreover, the study from the USA [ 230 ] did not illustrate any change in healthcare staff’s implicit racial bias post-intervention as compare to pre-intervention.

This scoping review only includes English-language empirical articles examining racism in healthcare globally. To our knowledge, this is the first scoping review that reviews both qualitative and quantitative studies that explore racism in healthcare in various countries. The coding of the included articles showed that articles examine healthcare users’ and healthcare staff’s experiences of racism in healthcare, healthcare racial attitudes, and beliefs, effects of racism in healthcare on various treatment choices, healthcare staff’s reflections on racism in healthcare as well as articles examining antiracism training in healthcare.

Healthcare and national contexts notwithstanding, various racialized minorities seem to share commonalities in the way they experience racism as per the reviewed articles, especially regarding the more covert type of racism. Racialized minorities perceive their experiences of racism as consisting of inadequate care and a dismissal of their symptoms and suffering, a lack of respect, and a lack of power to negotiate in healthcare interactions [ 7 , 36 , 240 , 241 ]. These experiences of racism result in a loss of trust in healthcare, higher unmet needs [ 242 ], and subsequently delaying seeking healthcare [ 243 ]. Moreover, studies report that healthcare staff tend to homogenize racialized minority healthcare users, to view them as irrational, difficult and frustrating, and as too emotional and dramatic [ 14 , 181 , 182 ]. Studies looking at implicit racial bias show that healthcare staff may exhibit racial bias in favor of majority groups [ 191 , 244 ], such that minorities receive deprioritized diagnoses and treatment that [ 61 ]. Studies that look at differential treatment between racialized minorities and majority groups also illustrate inadequate care regarding various treatment choices such as pain medications, HIV prophylaxis [ 211 ], cardiovascular disease [ 95 ], perinatal care [ 203 ], end of life care [ 11 ], and other indicators [ 209 , 245 ]. Moreover, racialized minority healthcare staff also experience racism both from healthcare users and other healthcare staff [ 149 , 158 ]. There is an expectation that racism from healthcare should be tolerated, resulting in emotional depletion and mental health issues, as healthcare staff often do not find space to discuss their experiences of racism in their workplace [ 153 ].

While racism persists in healthcare and operates in various dimensions, healthcare staff nonetheless construct themselves and the healthcare they provide as objective and neutral [ 172 , 213 , 217 , 219 ]. Studies show that healthcare staff find it difficult to discuss racism and accept racism as part of healthcare interactions. While some studies show some healthcare staff awareness of racism as a structural issue in healthcare [ 221 ], confusion regarding how to define racism and ‘race’ is also apparent [ 69 , 220 ]. This is also shown by studies that evaluate antiracist training. Healthcare staff participating in such training often state that they do not discuss racism in their workplace and find it uncomfortable to discuss racism [ 232 , 238 ]. Although antiracism training shows that healthcare staff exhibit greater empathy towards racialized minorities, it is unclear whether such educational efforts effectively alter racial bias and attitudes.

Knowledge gaps in the reviewed articles

Lack of articles on racism in healthcare in european contexts.

The articles reviewed here are dominated by research from the USA, which constitutes 67% of the articles scoped, followed by UK and Canada (7%). The domination of data from the USA may be explained by the availability of racial category data in the USA. In the USA, ‘race’ is a legal category, enabling data to be readily available for research, which is not the case in many European countries. The small number of European studies, mainly from the UK, shows that racism in healthcare is also a problem in these countries. However, with the exception of the UK, it is presently difficult to offer any conclusive evidence of racism in healthcare in Europe. This lack of evidence regarding racism exists despite evidence of racial/ethnic inequalities between foreign-born healthcare users and natives in Europe [ 246 ] and reports of discontent and othering processes in healthcare encounters. This could be due to the sensitive and politicized nature of racism and the construction of Europe as exceptional and antiracist [ 28 , 247 ]. With the rejection of ‘race’ as a scientific category, following the Second World War, ‘race’ and racism have been largely occluded from European social formations, political and public discourse [ 247 ], while integration of migrants has been the main policy focus [ 248 ]. This focus on integration, with racism constructed as an issue of the past, makes discussions around racism in Europe difficult [ 249 ]. This difficulty informs research on racism in healthcare and is reflected in the seemingly sparse research in Europe on the issue in contrast to the USA, where discussions around racism are more common. In addition to this, many of the articles that reported on racism in healthcare from European settings did not set out to examine racism in healthcare. For instance, research setting out to examine barriers to and facilitators for racialized minorities seeking in healthcare in European settings, ended up reporting racism since racialized minorities discussed experiencing racism. This reflects that racism is experienced but may be under researched due to the difficulties of discussing racism in a European setting. Hence, there is a need to do more research regarding racism in healthcare in European settings both from the perspectives of healthcare users and healthcare staff.

Research on racism in healthcare is descriptive, ahistorical and atheoretical

The research on racism in healthcare is fragmented and scattered across disciplines and healthcare contexts. Thirty-seven percent of the included articles did not set out to examine racism in healthcare and hence framed their research in terms other than racism. Nevertheless, the majority of the remaining 67% of the articles that had racism as their main focus, except a few articles [ 14 , 32 , 35 , 36 , 43 , 46 , 48 , 50 , 51 , 53 , 69 , 76 , 91 , 96 , 98 , 102 , 118 , 123 , 127 , 142 , 148 , 149 , 152 , 156 , 160 , 162 , 165 , 169 , 172 , 175 , 189 , 192 , 218 , 221 , 222 , 223 , 224 , 241 , 250 , 251 , 252 , 253 , 254 , 255 , 256 ] lacked a conceptualization of racism and ‘race’ and did not include a definition of these concepts. As research lacks a way to define and conceptualize racism in healthcare, the majority of the studies treat ‘race’ and racial categories as real, ahistorical, and pre-constituted categories. There is a general lack of attention to and illustration of the historical context within which these racial categories have been formulated. Put in other words, research tends to study ‘race’ instead of looking at racialization processes and the resulting racism that subsequently constructs an idea of ‘race’ (Nazroo et al., 2020). Furthermore, studies, especially quantitative studies from the USA looking at differential treatment across racial categories, tend to conflate the terms ‘race’ and ethnicity. For instance, Black and White are considered racial categories in the USA, while Hispanic is considered an ethnic category [ 257 ]. In the reviewed articles, these categories are often examined together. Since these categories are, for the most part, not defined, it is unclear why they were chosen, what they mean and what the results that show differential treatment along these categories convey in regards to racialization processes in healthcare. Robert Miles [ 30 ] argues that racism is a historical process of domination where racialization is a central part of modern societies. Omi and Winant [ 258 ] define racialization as ‘the sociohistorical process by which racial categories are created, inhabited, transformed, and destroyed (…) Race is a matter of both social structure and cultural representation’ (p: 55–56). As such, racism operates in a wider system of racialization in which racial categories are produced and given meaning within racial hierarchies [ 259 ]. Robert Miles suggests that a way to understand and conceptualize racism is to view it as a process of racialization rather than invoking ‘race’ since ‘race’ is by default a vacuous ontological category that is produced by racism [ 30 ]. When ‘race’ is invoked in a non-critical and ahistorical manner, there is a risk of producing racial categories as fixed and unchanging biological classifications instead of the unstable social constructs that they are. Moreover, without a historical understanding of the meaning-making of racial categories, it becomes problematic since there is a risk that racialization is emphasized and reproduced in research.

Ahistorical and atheoretical approaches to research entails that many of the studies included in this scoping review frame their research around the specific illnesses/diseases or symptoms that they study rather than around racism. For instance, studies that look at HIV prophylaxis, e.g. [ 211 ] or opioid prescription [ 260 ] would frame their study around these specific illnesses rather than racism. While this is a valid way of framing studies, the consequence of this in regards to the general nature of the research is that the object of research becomes the illness or condition studied rather than racism itself which remains untheorized. While it is important to document inequalities in treatment and health indicators, it is well established that racism is an integral part of modern institutions and structures [ 1 ]. Research around racism in healthcare needs to move beyond describing the existence of racism to theoretically explaining and conceptualizing how racism actually works in healthcare and the racialization processes that lead to material inequalities in healthcare. In order to do this, research on racism in healthcare should engage with sociological research regarding the meaning-making of racial categories and racialization processes.

This review confirmed that the dominant professional discourse in healthcare portrays healthcare staff as ‘natural history scientists’ who are not affected by bias, as reflected by the discrepancy between healthcare staff’s image of themselves as objective on the one hand [ 172 , 213 , 217 , 219 ], despite evidence of of racial bias [ 185 , 187 , 261 ] as well as healthcare users’ experience of racism in healthcare settings [ 32 , 38 ] on the other hand. For the most part, this discrepancy is left underexplored as the main focus of articles is to document experiences of racism. Sociological research on racial denial (van Dijk, 1992; van Dijk, 1999) [ 262 , 263 ], colorblind racism, and racism without racists [ 4 ] may aid in explaining why racism remains a difficult issue to discuss, even in USA where a majority of studies of this topic are conducted. Sociological research on contemporary racism may also illuminate why some articles show that healthcare staff tend  to deny the existence of racism in healthcare even with evidence of racial inequalities. ‘Racism without racists’ understanding of contemporary racism [ 4 ] offers a framework that explains how racism persists in healthcare interactions even when healthcare staff constructs themselves and healthcare as neutral. Hence, sociological research on racism and racialization may help research on racism in healthcare to examine how racial inequality can be reproduced through supposedly non-racial practices such that colorblind racism can become normalized in healthcare.

Research on antiracism in healthcare and future implications

There has been a huge increase in the volume of research on racism in healthcare from 2017 onwards, amounting to more than 100 articles that were found through this review. This is positive as it reflects an academic increase in the topic of racism in healthcare. However, this increase in volume does not imply an improved quality since these articles report on the same dimensions of racism that have already been reported on in previous years, even when they report on different healthcare contexts. The research remains descriptive, ahistorical and lacking definitions of key concepts. However, an exception to this is an increasing, although still limited, amount of research on antiracism interventions in healthcare. This research is an emerging dimension essential in dealing with racism in healthcare and needs to be further developed. However, this research remains atheoretical as well. If racism is often produced through unconscious processes as evidenced by research showing the existence of implicit racial bias of healthcare staff, how will antiracist interventions speak to the unconscious nature of racism? Some of the studies examining antiracist training show that although healthcare staff’s empathy towards racialized minorities increases after these interventions and that healthcare staff feel more comfortable discussing racism, racism remains a polarizing issue [ 239 , 264 ].

Additionally, one study shows that implicit racial bias pre-and post-intervention remains significantly unchanged [ 230 ], which is to be expected if racism is understood as an outcome of historical processes and deeply embedded in social institutions. The question remains as to how to design and implement effective antiracist interventions in healthcare. Nazroo [ 6 ] argues that ‘any consideration of racism must necessarily focus on the structural, macro, level (…) Here, the legacies of historical regimes of colonialism, race-based slavery and apartheid interact with current processes of globalisation, migration and governance, continuing to shape present day inequalities in accessing key economic, physical and social resources’ (p: 265). As such, antiracism training and intervention must find a way to solicit reflections of these historical regimes over a longer period. One way of doing this is to implement educational strategies within medical, educational and organizational settings to make visible structures of racial domination and to have continuous conversations and dialogues on the issue of racism and its intersections with other systems of domination.

Limitation of this review

Although the review followed a systematic method, it is possible that not all articles were incorporated. Additionally, as articles were only included if the search terms were used in the abstract or title, articles which discussed racism in the text without naming it in the title or abstract may have been excluded. Furthermore, articles discussing racism that used terms other than racism or discrimination such as bias, prejudice and stereotypes were also not included in this review. No screening of references in the included articles was conducted. The results of this review are based on English-language empirical research reports, which excludes articles in languages other than English that may discuss racism. This partially explain why the majority of the articles are from English speaking countries.

Conclusion and key recommendations

Research on racism in healthcare show that racism operates in various dimensions between healthcare staff and users and affects treatment and diagnosis in various health indicators. In Fig.  5 above, key recommendations on future research on racism based on the results of the review, are provided. There has been an increase in the volume research from 2017 onwards. However, research is mainly descriptive, atheoretical, and uses racial categories critically, as if they were fixed and ahistorical. Hence, research tends to ignore racialization processes in healthcare and makes it difficult to conceptualize racism in healthcare and understand how racism is produced in healthcare. Research on racism in healthcare could benefit from sociological research on racism and racialization to explain how overt racism is produced and how racism is normalized and hidden behind supposedly non-racial practices in healthcare. Additionally, research is dominated by the USA, and it is imperative that research is also conducted in other geopolitical contexts.

Key recommendations for future research on racism in healthcare

Availability of data and materials

All articles included in this review are available in a table included as an additional file.

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Acknowledgements

The authors would like to acknowledge the valuable support of Professor Sandra Torres at the department of sociology, Uppsala University during this scoping review.

Open access funding provided by Uppsala University. This article is part of a project funded by Vetenskapsrådet (Swedish research Council). Diary number: 2016–04078.

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Sarah Hamed, Hannah Bradby, Beth Maina Ahlberg and Suruchi Thapar-Björkert contributed equally to this work.

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Sarah Hamed, Hannah Bradby & Beth Maina Ahlberg

Skaraborg Institute for Research and Development, Skövde, Sweden

Beth Maina Ahlberg

Department of Government, Uppsala University, Uppsala, Sweden

Suruchi Thapar-Björkert

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SH drafted the review article. HB, BMH and ST oversighted the writing process providing scientific supervision and approved the final product. SH conducted the initial search process. This process was then reviewed by all authors. Exclusion and inclusion of articles was conducted by SH and checked and rechecked by all other authors. The articles were read and coded in a consultation process by all authors of this study. When this process was concluded, SH drafted the review which was read, commented on and approved by all authors for submission.

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Additional file 1..

 Prisma checklist. Preferred Reporting Items for Systematic reviews andMeta-Analyses extension for Scoping Reviews (PRISMA-ScR) Checklist.

Additional file 2:

Table 1. Summary of articles describing racismin healthcare included in scoping review: title, authors, year, location, aim,methods and findings.

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Hamed, S., Bradby, H., Ahlberg, B.M. et al. Racism in healthcare: a scoping review. BMC Public Health 22 , 988 (2022). https://doi.org/10.1186/s12889-022-13122-y

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Received : 14 January 2022

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Published : 16 May 2022

DOI : https://doi.org/10.1186/s12889-022-13122-y

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eTable. Weighted Row Percentages of Descriptive Statistics (n = 2,137)

eFigure 1. Five Most Common Reasons for Experiencing Discrimination, by Gender

eFigure 2. Five Most Common Reasons for Experiencing Discrimination, by Race

eAppendix. Sampling and Recruitment

• Addressing Racial Discrimination in US Health Care Today JAMA Health Forum Insights March 5, 2021 Sara N. Bleich, PhD; Laurie Zephyrin, MD, MBA; Robert J. Blendon, ScD

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Nong P , Raj M , Creary M , Kardia SLR , Platt JE. Patient-Reported Experiences of Discrimination in the US Health Care System. JAMA Netw Open. 2020;3(12):e2029650. doi:10.1001/jamanetworkopen.2020.29650

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Patient-Reported Experiences of Discrimination in the US Health Care System

• 1 Department of Health Management and Policy, University of Michigan School of Public Health, Ann Arbor
• 2 Department of Kinesiology and Community Health, University of Illinois at Urbana-Champaign, Champaign
• 3 Department of Epidemiology, University of Michigan School of Public Health, Ann Arbor
• 4 Department of Learning Health Sciences, University of Michigan Medical School, Ann Arbor
• Insights Addressing Racial Discrimination in US Health Care Today Sara N. Bleich, PhD; Laurie Zephyrin, MD, MBA; Robert J. Blendon, ScD JAMA Health Forum

Question   What are the national prevalence, frequency, and main types of discrimination that adult patients report experiencing in the US health care system?

Findings   In this nationally representative cross-sectional survey study, 21% of 2137 US adult survey respondents indicated that they had experienced discrimination in the health care system, and 72% of those who had experienced discrimination reported experiencing it more than once. Racial/ethnic discrimination was the most frequently reported type of discrimination respondents experienced.

Meaning   Experiences of discrimination in the health care system appear to be more common than previously recognized and deserve considerable attention.

Importance   Although considerable evidence exists on the association between negative health outcomes and daily experiences of discrimination, less is known about such experiences in the health care system at the national level. It is critically necessary to measure and address discrimination in the health care system to mitigate harm to patients and as part of the larger ongoing project of responding to health inequities.

Objectives   To (1) identify the national prevalence of patient-reported experiences of discrimination in the health care system, the frequency with which they occur, and the main types of discrimination experienced and (2) examine differences in the prevalence of discrimination across demographic groups.

Design, Setting, and Participants   This cross-sectional national survey fielded online in May 2019 used a general population sample from the National Opinion Research Center’s AmeriSpeak Panel. Surveys were sent to 3253 US adults aged 21 years or older, including oversamples of African American respondents, Hispanic respondents, and respondents with annual household incomes below 200% of the federal poverty level.

Main Outcomes and Measures   Analyses drew on 3 survey items measuring patient-reported experiences of discrimination, the primary types of discrimination experienced, the frequency with which they occurred, and the demographic and health-related characteristics of the respondents. Weighted bivariable and multivariable logistic regressions were conducted to assess associations between experiences of discrimination and several demographic and health-related characteristics.

Results   Of 2137 US adult respondents who completed the survey (66.3% response rate; unweighted 51.0% female; mean [SD] age, 49.6 [16.3] years), 458 (21.4%) reported that they had experienced discrimination in the health care system. After applying weights to generate population-level estimates, most of those who had experienced discrimination (330 [72.0%]) reported experiencing it more than once. Of 458 reporting experiences of discrimination, racial/ethnic discrimination was the most common type (79 [17.3%]), followed by discrimination based on educational or income level (59 [12.9%]), weight (53 [11.6%]), sex (52 [11.4%]), and age (44 [9.6%]). In multivariable analysis, the odds of experiencing discrimination were higher for respondents who identified as female (odds ratio [OR], 1.88; 95% CI, 1.50-2.36) and lower for older respondents (OR, 0.98; 95% CI, 0.98-0.99), respondents earning at least $50 000 in annual household income (OR, 0.76; 95% CI, 0.60-0.95), and those reporting good (OR, 0.59; 95% CI, 0.46-0.75) or excellent (OR, 0.41; 95% CI, 0.31-0.56) health compared with poor or fair health.

Conclusions and Relevance   The results of this study suggest that experiences of discrimination in the health care system appear more common than previously recognized and deserve considerable attention. These findings contribute to understanding of the scale at which interpersonal discrimination occurs in the US health care system and provide crucial evidence for next steps in assessing the risks and consequences of such discrimination. The findings also point to a need for further analysis of how interpersonal discrimination interacts with structural inequities and social determinants of health to build effective responses.

Health systems in the US are increasingly expressing concern about understanding and responding to social determinants of health (ie, the social and environmental conditions that may influence individual health and the differences in health and health outcomes between groups). 1 - 3 Considerable analytical work has identified a range of factors associated with inequities in treatments, outcomes, and mortality across race, sex, socioeconomic status, and various other social identities. 1 , 4 - 11 Some of these include patient-clinician discordance, physician bias, and daily experiences of discrimination. 1 , 3 , 12 , 13 Daily experiences of discrimination in other contexts (eg, while shopping, in employment, or in housing) have been studied extensively in association with downstream health outcomes, including but not limited to hypertension, cardiovascular disease, poor sleep, mental health symptoms, lower trust in the health care system, delayed or avoided care, and underuse of mental health services. 14 - 20 Despite considerable knowledge about the association between discrimination and health care utilization rates and health outcomes and the relevance of discrimination to health inequity, to our knowledge, experiences of discrimination in the health care system itself are understudied.

More specifically, previous work has provided important insights regarding the association between discrimination and health but has not identified patient-reported lifetime experiences of discrimination in the health care system at a national level in a way that captures the frequency and that allows for a full self-selection of the types of discrimination experienced. For example, some studies have drawn from narrow regional samples or limited respondent reports to the previous 12 months, 19 , 21 - 23 whereas other studies have asked participants to report discrimination associated with a single aspect of their identity, such as race or sex, as preselected by the research team. 24 , 25 In addition, there is limited information on the frequency of different types of discriminatory treatment, which may be a significant risk factor for chronic disease given the association between discrimination and health over the life course. 26 , 27

To better understand and respond to interpersonal discrimination in the health care system, as well as the potential downstream effects of discrimination in the context of structural inequity, it is necessary to identify these experiences and the frequency with which they occur at the national level. The objective of our study was to characterize patient-reported experiences of discrimination in a nationally representative sample of the US population in terms of (1) prevalence, (2) primary types of discrimination, and (3) frequency. To our knowledge, this is the first study to examine the prevalence, frequency, and types of discrimination in the health care system using a nationally representative sample that does not limit the respondents’ reporting time frame to 1 year or less.

We used the National Opinion Research Center (NORC) AmeriSpeak Panel probability-based, nationally representative sample of English-speaking US adults to conduct an online survey in May 2019. Prior to data collection, the survey instrument was pretested (n = 320). The research team conducted 17 cognitive interviews to assess comprehension and to improve the clarity of the survey questions, and NORC conducted a pilot survey with 115 respondents. Of 3253 surveys sent, 2157 individuals responded and completed the final survey (for a response rate of 66.3%) after being recruited via the NORC panel. We oversampled African American respondents, Hispanic respondents, and respondents with annual household incomes below 200% of the federal poverty level. Poststratification survey weights were calculated by NORC based on age, sex, educational level, race/ethnicity, housing tenure, telephone status, and Census division from the Current Population Survey. They also included weights for survey nonresponse (eAppendix in the Supplement ). This study followed the American Association for Public Opinion Research ( AAPOR ) reporting guideline for survey studies. The institutional review board of the University of Michigan reviewed and approved this project and waived the requirement to obtain informed consent because the research involved no more than minimal risk to participants, who had already provided informed consent to NORC.

To assess experiences of discrimination, we adapted the Major Experiences of Discrimination measures and the Experiences of Discrimination measures from the Coronary Artery Risk Development in Young Adults study. 28 , 29 We asked respondents (1) whether they had ever been discriminated against, hassled, or made to feel inferior while getting medical care and, if so, (2) what they believed was the main reason for that experience, and (3) how frequently they experienced this discrimination. A response of “yes” to the first question was defined as an experience of discrimination. Respondents chose from a list of 13 potential reasons for the discrimination, adapted from the Major Experiences of Discrimination measures, including an open-ended response for other reasons not listed. Two research team members (P.N. and M.C.) separately coded the free-text responses under “other” and reconciled any differences with a third team member (M.R.). Those responses were classified under extant categories or under additional categories that emerged through thematic analysis. Remaining free-text responses retained the “other” designation if they remained miscellaneous. After coding, there were 18 total types of discrimination for analysis.

The survey instrument defined the health care system as “the healthcare professionals and institutions that you personally interact with when getting health care.” Respondents self-reported their sex and racial or ethnic identity and reported their current insurance status as a binary measure of whether they currently had health insurance. They also indicated when they last received medical care and reported their health status on a 5-point scale ranging from poor to excellent health. We excluded 20 observations that had missing data for any of the measures included in the analysis.

We analyzed survey responses from 2137 participants with complete data. We first compared respondents who had experienced discrimination in the health care system with those who had not, using various demographic measures, including sex, age, race/ethnicity, educational level, income, health insurance status, rural or urban residency, having a regular source of medical care, having received care in the last 12 months, and self-reported health status. We conducted weighted bivariable and multivariable logistic regressions to examine associations between these variables and reported experiences of discrimination. We defined statistical significance as P  < .05 in 2-tailed tests. Next, we enumerated the reported types of discrimination, identified the most commonly reported types of discrimination, and then assessed the frequency of experiencing the 5 most commonly given reasons for discrimination. All reported percentages are weighted to provide population estimates. All analyses were conducted with Stata, version 14 (StataCorp).

Table 1 summarizes the demographic characteristics and general health status of all 2137 survey respondents and of the 458 respondents who reported experiences of discrimination, with unweighted frequencies and weighted percentages. Based on weighted percentages, approximately half of all respondents (1047 [52.3%]) were male (unweighted, 51.0% female). The mean (SD) age of respondents was 49.6 (16.3) years (range, 21.0-91.0 years), and the sample reflected the racial/ethnic composition of the US. 30 The majority of respondents had at least some college education (1675 [77.9%]), and approximately half (1022 [50.2%]) earned at least $50 000 in annual household income. Most respondents had health insurance (1890 [89.4%]) and lived in metropolitan areas (1899 [89.3%]). A large majority of respondents reported receiving care in the last 12 months (1809 [85.3%]) and having a regular source of care (1708 [81.0%]). Overall, 916 respondents (43.3%) reported being in good health. Just over one-fifth of respondents (458 [21.4%]; SE, 0.009) reported that they had experienced discrimination while getting medical care. The majority of respondents reporting discrimination were female (289 [63.1%]) and reported less than $50 000 in annual household income (279 [60.9%]). Compared with non-Hispanic White respondents (252 [20.3%]), higher proportions of Hispanic respondents (96 [22.9%]), non-Hispanic Black respondents (77 [22.8%]), and non-Hispanic respondents with other racial/ethnic identities (33 [23.4%]) reported experiences of discrimination (eTable in the Supplement ).

We observed statistically significant differences in reported experiences of discrimination across demographic groups and health-related characteristics ( Table 2 ). In bivariable analysis, those more likely to experience discrimination were female (odds ratio [OR], 1.87; 95% CI, 1.52-2.32), had poor or fair self-reported health status (OR, 1.71; 95% CI, 1.34-2.17 compared with good health), or lacked health insurance (OR, 1.50; 95% CI, 1.11-2.02). Those less likely to experience discrimination had an annual household income of at least $50 000 (OR, 0.64; 95% CI, 0.52-0.79), were older (OR, 0.98; 95% CI, 0.98-0.99), or had a regular source of medical care (OR, 0.74; 95% CI, 0.58-0.95). In multivariable analysis, these associations remained statistically significant with the exception of having a regular source of care (OR, 0.91; 95% CI, 0.68-1.14) and insurance coverage (OR, 1.21; 95% CI, 0.87-1.68). In multivariable analysis, the odds of experiencing discrimination were higher for respondents who identified as female (OR, 1.88; 95% CI, 1.50-2.36) and lower for older respondents (OR, 0.98; 95% CI, 0.98-0.99), respondents earning at least $50 000 in annual household income (OR, 0.76; 95% CI, 0.60-0.95), and those reporting good (OR, 0.59; 95% CI, 0.46-0.75) or excellent (OR, 0.41; 95% CI, 0.31-0.56) health compared with poor or fair health.

The 5 most commonly reported types of discrimination among 458 respondents were based on race/ethnicity (79 [17.2%]), educational or income level (59 [12.9%]), weight (53 [11.6%]), sex (52 [11.4%]), and age (44 [9.6%]). Just over one-quarter of respondents reporting discrimination selected “other reasons” for discrimination (121 [26.4%]). After coding free-text responses, some of which overlapped with extant categories, we identified 6 additional types of discrimination. The most common of these included insurance and health finances or ability to pay for care (21 [4.6%]). One respondent described this type of discrimination by writing “I felt that with Medicaid [you] get pushed aside but when I had Blue Cross Blue Shield I [was seen] immediately.” Drug use and medication use were also sources of discrimination for some respondents (18 [3.9%]). This category referred to stigma and discrimination based on the medications that respondents were taking, prior substance use, or assumed drug-seeking behavior. For example, 1 respondent reported that “I was honest about having a drug addiction. They treated me like I was not important at all and insinuated that I was just trying to get pills.”

Discrimination based on mental health status was also reported by 9 respondents (2.0%) in free-text responses, and lifestyle (eg, having tattoos) was reported by 5 respondents (1.1%). Forty-two respondents (9.2%) who reported discrimination felt hassled or discriminated against because of their clinician’s attitude or behavior. This included feeling dismissed or disrespected by clinicians in a way that was not captured by the multiple-choice responses. Responses coded as “provider attitude” reflected comments that described experiences of being treated poorly, disbelieved, or brushed off while seeking care. Reasons that remained miscellaneous retained the “other” label (18 [3.9%]). Table 3 gives the frequencies for the primary types of discrimination that respondents reported and includes all reported reasons for discrimination as selected by respondents for the entire sample and by race. Although racial/ethnic discrimination was the most commonly reported type of discrimination, race/ethnicity was not significant in the bivariable or multivariable analysis. This is a statistical power issue because non-Hispanic White respondents, predominant in the sample, reported far less racial discrimination (10 [4.0%]) than non-Hispanic Black (42 [54.6%]), Hispanic (21 [21.9%]), and other racial and ethnic minority (6 [18.2%]) respondents. Table 3 also gives the differences in proportions of respondents reporting discrimination by race.

Among 458 respondents who reported discrimination in the health care system, 330 (72.1%) said that they had experienced it more than once. We report the frequency of these experiences in Table 4 . The majority of respondents who experienced discrimination across all 5 of the most commonly reported types of discrimination reported experiencing it 2 or 3 times. In fact, 16 respondents (20.3%) who experienced racial discrimination and 13 respondents (22.0%) who experienced discrimination based on their educational or income level experienced it 4 or more times. Sex (5 respondents [9.6%]) and age discrimination (3 respondents [6.8%]) were less frequently reported as occurring 4 or more times.

Our study estimates that, overall, more than 1 in 5 adults in the US have experienced discrimination at least once while receiving health care. Racial discrimination was the most commonly reported type of discrimination, followed by discrimination based on educational or income level, weight, sex, and age. After conducting multivariable logistic regressions, we found that respondents who were younger, identified as female, had lower annual household income, and reported poor or fair health were statistically significantly more likely to report experiences of discrimination.

Our results are consistent with previous studies examining experiences of discrimination in health care as well as in other settings. For example, prior work has found between 25.2% and 43.5% of survey respondents reporting ever experiencing discrimination in any setting. 31 Estimates of discrimination in the health care system have varied based on the use of different reporting time frames and sampling approaches. For example, one national study of discrimination found that 7.3% of respondents had experienced discrimination in the health care system only in the previous 12 months, whereas a community survey found approximately 14% of respondents reported ever experiencing discrimination in the health care system. This proportion was higher for Black respondents and Latino respondents, which was also true in our sample. 24 , 28 Although there may be a lower prevalence of discrimination in the health care system compared with some other settings, such as housing or policing, discrimination is still a frequent experience among patients, and health care is not immune to larger national trends. 28 , 29 Health care settings are also distinct; for instance, patients may be more forgiving or may not recall discriminatory incidents after a visit if they were very concerned about a serious illness. Patient experiences of discrimination may actually be higher and require further study through mixed-methods approaches.

Experiences of discrimination in the health care system harm patients by negatively impacting trust, communication, and health-seeking behaviors. 13 , 16 , 32 , 33 Our findings underscore the importance of understanding aspects of patient identity, especially with regard to race/ethnicity, not as risk factors for discrimination or the downstream effects of those experiences; rather, exposure to discrimination and racism are the risks. 34 , 35 The prevalence of discrimination identified in this study points to a need to examine discrimination in the health care system as a risk factor for other negative effects. Future work on interpersonal discrimination in the health care system should examine the types of discrimination we have identified herein, with the understanding that they are harms imposed on patients rather than caused by or reflective of patient demographic characteristics. 36 This future work should also explore the ways that discrimination is manifested and where in the health care system it is occurring most often.

Our study analyzes a wide variety of types of discrimination, including several highlighted directly by respondents. Each of these types of discrimination requires focused analysis and particular policy responses. For example, in supplementary analyses (eFigure 2 in the Supplement ), most of the respondents experiencing racial discrimination were Black persons. To effectively respond to the harms of racial discrimination in the health care system, anti-Black racism needs to be specifically analyzed and addressed. Furthermore, recognizing that discrimination is not discrete or necessarily additive, future work should also inform policy responses by building on existing literature to investigate the effects of layered or interacting types of interpersonal discrimination. For example, the vast majority of respondents reporting weight-based discrimination in the present study were women (eFigure 1 in the Supplement ). The intersection between sex- and weight-based discrimination represents only 1 example of how policy will need to respond to intersections of identity and discrimination. Intersectional policy and practice guidance will need to be built on and responsive to these multiple dimensions of discrimination to effectively respond to them. 37 Such work should complement and inform efforts to address systemic inequities.

Patient self-reports of discrimination are challenging to measure because the specific types of discrimination occurring may be unclear. This survey was able to capture only a single type of discrimination, which may mean that the reports underestimated patient experiences of discrimination. Some of these discriminatory experiences may also be internalized and denied, which suggests that reports may further underestimate the prevalence of discrimination. 38 Nevertheless, patient perspectives are critical in analyses and in policy designs that aim to address discrimination and health inequities. The prevalence of discrimination in the health care system that we identified builds on existing evidence that it is a problem requiring large-scale policy responses. As health care institutions throughout the country reckon with how systems interact to produce inequity, our study provides national estimates of the prevalence, frequency, and types of discrimination useful for policy, serving as 1 step in the process of building evidence-based responses.

In addition to a broad reckoning with discrimination, there are also localized approaches that may be appropriate to reduce harm in the shorter term. These include seeking information about experiences of discrimination and using that information to alter system-level policies to address inequality. 39 Health care systems can include measures of experiences of discrimination in their patient surveys to identify the occurrence of discrimination in their organizations and its effects on their patient populations to respond appropriately. Our study may provide guidance on the types of questions to include because the survey items used here build on previously validated measures. Furthermore, our analysis of “other” types of discrimination may suggest additional categories for inclusion in patient surveys. For example, the frequency with which medication or drug use and insurance-based discrimination were reported in this study indicates that further analysis of these health-specific types of discrimination may be warranted. This expanded data collection will enable health care systems to identify the particular types of discrimination occurring in their organizations and, most importantly, address them systematically.

There are a few limitations to this study that should be considered in interpreting the results. The survey questions allowed participants to report only 1 primary type of discrimination, which limits our understanding of the multidimensionality of discrimination and the nature of encounters during which experiences of discrimination occurred. 40 , 41 Furthermore, self-reports of discrimination are challenging to measure because some of these experiences may be internalized and denied by individuals, making our estimate of approximately 20% of people who have ever experienced discrimination while receiving health care potentially underestimated. 38 Also contributing to a potential underestimation are the limits of race/ethnicity response categories that did not specifically capture American Indian, Alaska Native, or Middle Eastern identities. The survey was conducted only in English, which may have excluded some potential respondents. Finally, although we include some supplementary analyses that began to analyze across multiple demographic categories and types of discrimination, future analysis will need to address these numerous dimensions of identity and discrimination in more detail.

This is the first study, to our knowledge, that has examined the prevalence, frequency, and types of discrimination in the health care system using a nationally representative sample without limiting respondents’ reporting time frame. We found that experiences of discrimination in the health care system (21.4%) were more common than previously known and that these experiences typically occurred more than once. The 5 most commonly reported primary types of discrimination that we identified were based on race/ethnicity, educational or income level, weight, sex, and age. Addressing the immediate harms of these types of discrimination in the health care system should be an immediate policy and health care system priority.

Accepted for Publication: October 23, 2020.

Published: December 15, 2020. doi:10.1001/jamanetworkopen.2020.29650

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2020 Nong P et al. JAMA Network Open .

Corresponding Author: Paige Nong, BA, Department of Health Management and Policy, University of Michigan School of Public Health, 1420 Washington Heights, Ann Arbor, MI 48109 ( [email protected] ).

Author Contributions: Ms Nong and Dr Raj had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Nong, Creary, Platt.

Acquisition, analysis, or interpretation of data: Nong, Raj, Kardia, Platt.

Drafting of the manuscript: Nong, Raj, Creary, Platt.

Critical revision of the manuscript for important intellectual content: Raj, Creary, Kardia, Platt.

Statistical analysis: Nong, Raj, Kardia, Platt.

Obtained funding: Kardia, Platt.

Administrative, technical, or material support: Creary, Kardia.

Supervision: Platt.

Conflict of Interest Disclosures: Dr Kardia reported receiving grants from the National Institutes of Health during the conduct of the study. No other disclosures were reported.

Funding/Support: This work was funded by grant 5R01 CA214829-03 from the National Cancer Institute.

Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

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• Research article
• Open access
• Published: 04 December 2018

Disabled people’s experiences of accessing reasonable adjustments in hospitals: a qualitative study

• Stuart Read 1 ,
• Pauline Heslop   ORCID: orcid.org/0000-0002-8628-6868 1 ,
• Sue Turner 2 ,
• Victoria Mason-Angelow 1 ,
• Nadine Tilbury 1 ,
• Caroline Miles 1 &
• Chris Hatton 3  

BMC Health Services Research volume  18 , Article number:  931 ( 2018 ) Cite this article

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The UK Equality Act 2010 requires providers of health services to make changes or ‘reasonable adjustments’ to their practices in order to protect disabled people from discrimination or disadvantage when accessing care. Existing evidence suggests that despite this legislation, health services are not always providing reasonably adjusted care for disabled people. This paper presents the perspectives of disabled people themselves in relation to their experiences of accessing reasonable adjustments in hospitals in England.

Twenty-one semi-structured interviews were held with disabled people who had a recent experience of hospital care in England. Participants were asked about the extent to which the hospital provided reasonably adjusted care, and if necessary, how they thought the provision of reasonable adjustments could be improved. Each interview was anonymised and transcribed, and the data analysed using thematic analysis.

Participants reported mixed experiences about whether and how reasonable adjustments were provided: some shared positive examples of good practice; others spoke about difficult encounters and limited provision. Recommendations made include a need for culture change in how reasonable adjustments are perceived and enacted; improvements in identifying the needs of disabled people; improvements to the hospital environment and the provision of information; and the need to involve disabled people themselves in the process of change.

Conclusions

Gaps remain in how reasonable adjustments are provided for disabled people accessing hospital care. It is important for hospital staff to listen to the perspectives of disabled people about the provision of reasonable adjustments, and make improvements as necessary. Hospital staff could also do more to share good practice in relation to the provision of reasonable adjustments to effectively inspire and embed positive change.

Peer Review reports

Within England, healthcare providers are required to ensure that the care they provide to patients is ‘person-centred’, and designed to suit each person’s individual needs, wishes and preferences [ 1 ]. Person-centred care is achieved in practice through the patient and healthcare provider working collaboratively to achieve desired care strategies and outcomes, rather than the patient being a passive recipient of care [ 2 , 3 ]. Person-centred care has been successful in demonstrating improvements in health outcomes [ 4 ].

An additional dimension of person-centred care for disabled people Footnote 1 is ensuring that they have full access to health services – and this is achieved through the provision of ‘reasonable adjustments’ Footnote 2 [ 1 , 5 ]. The UK Equality Act 2010 [ 6 ] requires public services, including health services, to provide changes or ‘reasonable adjustments’ to their practices to ensure that disabled people are not denied access to the quality of care afforded to non-disabled patients. The requirement is ‘anticipatory’, so services are required to anticipate and make provision for adjustments that disabled people may require (S149) [ 6 , 7 ]. The Equality Act 2010 [ 6 ] defines a disabled person as anyone who has ‘a physical or mental impairment’ and for whom the impairment has ‘a substantial and long-term adverse effect on [their] ability to carry out normal day-to-day activities’ (S6.1).

The Equality Act 2010 [ 6 ] directs that services must consider the provision of reasonable adjustments in three ways. The first is changing the physical features of a service so that disabled people can access it, such as making buildings wheelchair accessible, or changing the visual appearance of wards or departments (e.g. making them ‘dementia friendly’ [ 8 ]). The second is changing existing practices or procedures to make access easier for disabled people, such as changing the timing, length or location of a disabled person’s health appointment [ 5 ]. The third is providing auxiliary services or aids so that disabled people are better able to access healthcare, such as providing a British Sign Language interpreter [ 9 ], or providing information in accessible formats [ 10 ]. These examples highlight that the provision of reasonable adjustments by healthcare providers can involve making global changes to health services that will benefit many disabled people, but also changes at an individual level to help meet the specific needs of a disabled person.

There are a number of recent initiatives in England to encourage reasonably adjusted care for disabled people in hospitals. The National Health Service (NHS) Standard Contract requires providers of health services to comply with the Equality Act 2010 [ 11 ]. The Accessible Information Standard [ 12 ] aims to ensure that disabled people are able to communicate and to access information in a way that is suited to their individual needs. NHS Digital [ 13 ] is working to develop a ‘flag’ on the Summary Care Record, which is a collection of a patient’s individual information created from their medical records held by their general practitioner. This will alert staff that the person is entitled to the provision of reasonable adjustments, and provide a record of the exact adjustments agreed. Finally, a series of documents detailing the type of reasonable adjustments needed for people with intellectual disabilities living with different healthcare conditions has been produced by Public Health England [ 14 ].

Despite the legal requirement and policy initiatives to provide reasonable adjustments for disabled people, evidence suggests that they are not being consistently provided by hospital services [ 7 , 15 , 16 ]. Many NHS Trusts (public bodies with responsibility for the provision of health services in a geographical area) have demonstrated a commitment to providing effective reasonable adjustments for disabled patients, such as ensuring staff receive training about the needs of disabled people [ 7 ]. However, research by Tuffrey-Wijne and colleagues [ 15 , 16 ] suggested that although legislation or policy may be in place, the responsibility to enact it lies with individual hospitals. Therefore, whether and how reasonable adjustments are provided is shaped by the knowledge and responsiveness of hospital staff, and the resources that the hospital is willing to provide to ensure reasonably adjusted care. This is an important point to consider, as what reasonable adjustments are and how these are enacted may not be well understood by care providers [ 15 , 16 , 17 , 18 ].

Disabled people have reported barriers when accessing health services, including difficulties navigating inaccessible environments [ 19 ]; and inconsistent use of flagging systems, accessible information, and hospital passports (documents that are often used with people with intellectual disabilities to provide hospital staff with important information about their individual needs and health when they are admitted to hospital) [ 7 , 15 , 16 , 20 , 21 ]. Together, this raises questions about the quality of care that disabled people can expect to receive [ 17 ], which in turn, can affect their health outcomes, for example, a lack of reasonable adjustments was reported to be a contributory factor to the premature deaths of people with intellectual disabilities [ 22 , 23 ].

Evidence relating to the provision of reasonable adjustments by hospitals commonly focusses on patients with intellectual disabilities; evidence relating to disabled people with a broader range of impairments is more limited. In addition, disabled people’s own recommendations about how hospital services could potentially improve the provision of reasonable adjustments has rarely been sought. The aim of this study was to investigate first, disabled people’s own experiences of the provision of reasonable adjustments by hospital services; and secondly, to explore their ideas about potential improvements.

We conducted semi-structured interviews with disabled people about their own experiences of receiving reasonably adjusted hospital care. To develop the project information materials and topic guide, we worked with an advisory group of disabled people. The group suggested structuring the interview in a way that allowed disabled people to share their hospital ‘journey’, exploring their experiences before they arrived at hospital, during their hospital visit, and when they left hospital. The topic guide for the interviews was therefore developed specially for this research study and structured in this way see Additional file 1 .

Recruitment

To participate in the study, we required people to personally identify as disabled; be aged 18 years or older; and have accessed hospital care (e.g. inpatient, outpatient or accident and emergency) in England for a personal health need within the past 2 years. Information about the study was cascaded to disabled people via networks of disability and health or self-advocacy organisations in England. Disabled people interested in participating in the study contacted the research team to learn more about the project. They were then sent a study information sheet and a consent form to look at, and asked to think about one hospital experience in the past 2 years that they would feel comfortable discussing with the researcher. On the day of the interview, the interviewer discussed the project information sheet and consent form with the disabled person to ensure that they understood the interview process, and that they were happy to continue.

Interviews were conducted either in person at the participant’s home, or via telephone. The structure of the interview followed the topic guide, and focused on understanding participants’ hospital experiences, and whether and how reasonable adjustments had been provided, if required. Participants were asked whether the provision of reasonable adjustments could be improved by hospitals, and if so, in what ways. Each interview lasted approximately 1 h, and was audio-recorded, with consent.

The study received ethical approval from the Faculty of Social Sciences and Law Committee for Research Ethics, University of Bristol in 2016 (reference 30501).

Interviews were transcribed and the transcripts anonymised. We used thematic analysis as an analytical framework, as described by Braun and Clarke [ 24 ]. Using NVivo 10 software, the lead author independently read all of the interview transcripts and assigned codes to establish patterns from the texts. Themes and linked subthemes were then extracted. Through a process of iterative reading and analysis, codes and themes were modified and shaped, and an initial coding frame based on the thoughts and reflections of the lead author was produced. Each of the interview transcripts were then independently read by two co-authors, who recorded their initial thoughts for emerging codes and themes. The three researchers then met to collaboratively discuss ideas about the data and to agree the final themes relating to disabled people’s experiences of reasonable adjustments to the hospital care they received, and to their recommendations for improvements.

Twenty-one disabled people participated in the study. As Table 1 shows, this included 12 women, eight men, and one couple (one man and one woman). Participants were drawn from across England.

Although the study did not require disabled participants to disclose the nature of their impairments, the content of many of the interviews indicated that participants experienced a range of different impairments including physical impairments, sensory impairments, intellectual disabilities, and mental health support needs.

Five themes relating to reasonable adjustments to the hospital care disabled people received were identified from the interview data: (i) the process of identifying a person’s need for reasonable adjustments; (ii) reasonable adjustments in relation to the physical features of a hospital; (iii) changes to existing practices within a hospital; (iv) the provision of additional aids or services; and (v) recommendations for the provision of reasonable adjustments for disabled people by hospitals.

The process of identifying a person’s needs for reasonable adjustments

Participants discussed a variety of ways in which their need for reasonable adjustments was identified and then recorded or ‘flagged’ on hospital systems. Identifying that a person is disabled and may need reasonable adjustments usually precedes the more formal process of ‘flagging’, whereby a hospital alert or ‘flag’, is placed on the disabled person’s records to remind professionals that reasonable adjustments are required [ 13 ]. The distinction between identification and ‘flagging’, however, lacked clarity for most participants.

One participant (P7) with intellectual disabilities described a positive experience of a health professional reviewing her hospital passport with her, commenting that ‘it’s good having it’ to ensure that the staff understood her needs. However, this was an uncommon experience amongst the participants. More frequently, participants indicated that their needs were not identified and recorded, as the following exchanges typified:

Interviewer: did the hospital do anything that you can think of that made them aware about your needs? So, did they perhaps contact you to talk about your needs, and what adjustments may be provided?

Participant: No, there's never any...I've never had any contact of that nature. (P4)

Interviewer: As you have been to hospital a few times, were your needs actually flagged up on the system? You said that you were well known to the staff.

Participant: To be honest, I'm finding I'm having to explain what I can do and I can't do to the nurses (P18).

Reasonable adjustments in relation to the physical features of a hospital

Participants made many references to the need for, or provision of reasonable adjustments in relation to the physical features of a hospital, such as its physical accessibility for people with mobility or sensory impairments. Some participants spoke about positive changes to a hospital’s physical features to make the environment more accessible for disabled people – sometimes in a number of creative ways. For example, one woman noted how the outpatient department was accessible to disabled people with different impairments:

…everything is on the flat […] they're nice, wide corridors actually. And they're well lit. And they do have hand rails. Which are a great help, you know. Especially if you're not too steady on your feet, it's always nice to know there's something there to grab hold of, if you happen to be walking. And […] that's a low-level desk, so that you have no trouble, you're not straining or anything, you know. And as far as I'm aware, they have induction loops for if you were wearing […] hearing aids (P9).

Other participants had mixed experiences about the extent to which the hospital had adjusted its physical features, for example noting that although some changes had been made, they were insufficient to address the barriers experienced by disabled people. One man with a physical impairment explained that although some physical features of the hospital were suitable, he was at a disadvantage because of an inaccessible door release:

The corridors were wide enough. Again, using the lifts, the buttons are at a reasonable level. There's two – there's three floors. There's an announcement in the lift, there's Braille on the lift buttons, there's signage. The doors, because obviously with security they have to remain closed, but I found that when I was using – when I was in my powered wheelchair, I was limited to going places. I had to wait for someone to come and open the door […] I mean other people were using it quite normally and pressing the button to let themselves out. Whereas I couldn't reach it. Had to call a member of staff, or someone to come past and ask them to push the button to release the door, for them to open the door (P18 ).

Other participants described difficulties trying to use hospital services, suggesting that little or no attention had been paid to identifying if a person was disabled and required reasonable adjustments. For example, one woman (P5) described difficulties when attending a mammogram appointment, when the cubicle was too small for her to be able to get changed easily.

Changes to existing practices within a hospital

Some participants stated that hospital staff were willing and able to adjust standard hospital practices to meet their needs. The examples shared by participants indicated that such reasonable adjustments had been provided both to help disabled people engage with the hospital system as a whole, and with specific procedures. For example, one participant with a physical impairment described how his doctor understood and supported his request to have his wheelchair with him:

When I was in hospital, after a day, they said my condition was quite bad, and sent me to the intensive care unit, where there was an issue with having a powered wheelchair near the equipment. Which I can understand. And thankfully the doctor said, 'No, he needs his wheelchair.' Because I said to the doctor I – you know, I function better when I'm sitting up (P18).

Another participant with a visual impairment, explained that health professionals had understood and accommodated his needs effectively:

The consultant knew that I couldn't see. So sometimes she would guide me to the couch to lay on, so she could do....... And she was...you know, she explained what she was doing […] she explained everything (P17).

Such positive experiences were not described by all participants and some talked about how their needs as a disabled person were not met. For example, one woman said:

…I need an MRI [Magnetic Resonance Imaging] scan and then you go in one of these things, and I tell them (health professional), like ‘hey, I have hearing impairments, can you please stand on, you know, that side of my head?’ […] and then when you’re in there […] They sit on the wrong side or they, you know, gotta talk very loud, and I’m like, ‘no, that’s not gonna really help me’ (P12)

The provision of additional aids or services

Participants reported many examples of whether and how a hospital had provided additional aids or services for them. Key issues were accessible information, hospital transport, and the provision of additional assistance. In some cases, participants reported that they had been supported in a positive way by the hospital; others reported that their needs were not met appropriately.

One participant, for example, reported that she was provided with appropriate information, saying ‘I did have a lot of information sent to me, yeah. […] It was all easy language, all easy words’ (P7). Other participants, however, reported that the hospital did not appear to make accessible information readily available. One person with a visual impairment explained: ‘I prefer text, phone call or maybe emails […] but they do prefer to [send] - just a letter […] and that’s not appropriate for me ’ (P20).

A variety of experiences was also reported in relation to hospital transport. One person noted how she was pleased with the hospital transport service:

…we've got a very good hospital transport service. And if I haven't been able to get there, or if I have been in my wheelchair, and I've got a hospital appointment, I phone up and I get a hospital transport ambulance to come and get me, and I'm taken in to the appointment (P9).

Others reported disappointing experiences, including transport being provided that was not accessible for people using a wheelchair:

They sent an ambulance out, ambulance people say, ‘No, you can't take your wheelchair. Can't take your manual chair at all. It's an emergency ambulance, you can't have the wheelchair in it.’ So, I'm thinking, ‘Well I'm going to be a nightmare to nurse if I haven't got a chair at all up there. What's going on here?’ So, I had to get hold of one of the people that work for me and ask her if she'd come and collect a wheelchair to take it up to the hospital, so I had a manual chair to be in the ward (P3).

Another key area of concern to the disabled participants was having assistance at appointments. Again, participants reported mixed experiences. One participant commented: S omebody helped me, you know. You know, took my arm and things like that […] [they] asked which side I wanted, you know, which way did I want to go, left or right, things like that (P13). Another participant commented:

The radiographer did [provide assistance]. I told her I couldn't see where I was going, she led me. She did everything she should have done. She was very patient-sensitive, if you like. But nobody else in the hospital was (P5).

Recommendations for change

Participants shared many ideas about the ways in which they thought improvements could be made to the provision of reasonable adjustments for disabled people by hospitals. Five key recommendations were made: a) culture change in how reasonable adjustments are perceived and enacted; b) improvements in identifying the needs of disabled people; c) improvements to the hospital environment; d) improvements to the provision of information; and e) disabled people themselves being involved in the process of change.

‘Culture change’ in how reasonable adjustments are perceived and enacted

The most commonly reported recommendation was the need for ‘culture change’ within the NHS in terms of how reasonable adjustments are perceived and provided by hospital staff. Participants generally understood and described ‘culture change’ as being related to the ways in which staff values or attitudes had an impact on their practice. The participants recommended that hospital staff should be more aware, open and responsive to the need for reasonable adjustments for disabled people. Strategies to bring about ‘culture change’ were proposed at a range of levels, including staff taking time to listen to disabled people themselves; the provision of staff training about the needs of disabled people; and systems and processes to be in place to clearly record a disabled person’s needs. As one participant commented: ‘ I don’t want special. I just want appropriate. […] But that means listen to people’ (P3).

Improvements in identifying the needs of disabled people

Another commonly reported recommendation for change was to better identify and record the needs of disabled people. Participants suggested the recording of a person’s needs on a personalised form such as a hospital passport, or on a standard reporting form currently in use throughout the hospital. One participant commented:

Well I think what they could have done is that on – considering the reception probably would have had a form for me […] they could have probably had a section on there as to what needs I had. Like, you know, needs a wheelchair […] you know, sort of take the initiative. (P14).

This was echoed by another interviewee, who considered that improvements to how a person’s needs were recorded would be beneficial to the overall running of the hospital:

You know, I did talk to them about it, and I said, 'You haven't got enough boxes to tick, like, ‘This patient needs a carer with them.’ ‘This person's in an electric wheelchair.' If those boxes were ticked, then appointments wouldn't be made that were wrong (P21).

Improvements to the hospital environment

The third key area for recommendations was for improvements to hospital environments. Recommendations were wide-ranging, and addressed a number of areas including improving wheelchair accessibility or the general physical access of a hospital; ensuring that disabled parking was close to the entrance; making sure that hospital transport services were accessible and can carry a support worker or carer if required; the provision of equipment or support to assist disabled people, such as hoists and hearing loops; and paying attention to signage, colour and general visual accessibility of the hospital so that disabled people are able to navigate their surroundings easily.

Improvements to the provision of information

Disabled people also recommended that improvements are required to the way in which information is provided by hospitals. Several spoke about the importance of receiving information that was in an accessible format for their needs such as large print, or easy-read materials, or information provided using different formats such as on a CD instead of using print. Hospital systems should be able to identify the specific information needs of disabled people and respond to them appropriately.

Disabled people themselves being involved in the process of change

Finally, some participants recommended involving disabled people themselves in identifying local opportunities for change and providing advice about implementing change. One participant (P16) recommended asking disabled patients to complete satisfaction questionnaires, or to take photographic evidence of any barriers they encountered to prompt service improvements. Others stressed the importance of disabled people themselves shaping improvements. For example, one participant who worked as a volunteer in her local hospital (P2) illustrated how being ‘on the ground’ could enable small but significant changes that increased accessibility for disabled people. She had identified that some automatic doors were problematic for disabled people as they were ‘swinging out too quickly’, so she reported this to the maintenance team and within a week the speed of the door opening had been changed and slowed down. It was the fact that she was able to identify this as a disabled person herself, and knew who to report it to, that appeared to have been instrumental in getting this changed.

This study explored disabled people’s own experiences about the provision of reasonable adjustments by hospital services, and their ideas about how this could be improved, if indicated. Participants reported mixed experiences about how reasonable adjustments were provided: some shared positive examples of good practice; others spoke about difficult encounters and limited provision. Challenges were in relation to the process of identifying a person’s need for reasonable adjustments; the physical features of a hospital; existing practices within a hospital; and the provision of additional aids or services.

In 2008, the Michael Inquiry reported that ‘There is a clear legal framework for the provision of equal treatment for people with disabilities and yet it seems clear that ... services are not yet being provided to an adequate standard’ ([ 25 ]: p.55). The legal framework was strengthened by the Equality Act 2010 [ 6 ], but the Life Opportunities Survey [ 26 ], a large-scale longitudinal survey of disability in Great Britain which was conducted at about the same time as the introduction of the Equality Act 2010, reported that up to 13% of disabled adults identified health staff as being responsible for discrimination they experienced. Disabled adults were significantly more likely than their non-disabled peers to experience barriers in accessing health care to the extent that ‘health care provision in Great Britain is failing to meet its statutory requirement to provide ‘reasonable adjustments’ to ensure equality of access for disabled adults’ ([ 19 ]: p.926).

Such concerns are not restricted to England. In the years following the passing of the Americans with Disabilities Act in 1990 [ 27 ], there was a growing body of research suggesting that barriers to healthcare access were persisting for disabled people because of the lack of reasonable adjustments provided [ 28 , 29 ]. A range of structural, financial, cultural and personal barriers to accessing healthcare were reported by disabled people of different ages and with a wide range of impairments, findings which were consistent with other studies carried out nationwide [ 28 ].

Research evidence about the identification and provision of reasonable adjustments by hospitals in England for disabled people subsequent to the Equality Act 2010 is scant but suggests the variable provision of reasonable adjustments by hospital services similar to that reported by disabled people in this study. A survey of 119 hospital Trusts (30% of all NHS Trusts in England) [ 7 ] concluded that some forms of reasonable adjustments were being delivered in many Trusts, particularly relating to the provision of accessible information and the use of hospital passports. The authors also identified that far fewer Trusts provided evidence about the provision of reasonable adjustments relating to the face-to-face treatment of patients. Our study participants did not identify a divide between collective adjustments for groups of patients and individualised adjustments for a particular patient, possibly because they were reflecting on the quality of provision provided to them, as well as the availability of the adjustments.

Tuffrey Wijne et al. [ 16 ] researched factors that promote and compromise the provision of reasonably adjusted healthcare for patients with intellectual disabilities in NHS hospitals. They reported that in order for reasonable adjustments to be embedded, hospital staff must be allowed to identify when disabled people require reasonably adjusted care, and provided with the necessary management support and resources to deliver the adjustments [ 15 , 16 ]. Effective collaboration between staff and departments is another important factor [ 15 , 16 , 22 , 23 ]. Our study participants reflected on times when there was no consistent identification and recording of their needs, which resulted in them repeatedly having to retell their ‘story’ and request adjustments to their care. Generally, they had felt disempowered by this, and some reported that such occasions had made them feel a ‘nuisance’. The overwhelming impression was that the provision of reasonable adjustments was on an ad hoc basis in response to a direct request and dependent on the largesse of an individual staff member. Were hospital procedures in place that could easily identify disabled people and the adjustments they required, and staff were equipped with the authority to deliver the adjustments, some of the problems faced by the participants may have been avoided.

Ward culture and staff attitudes are ‘crucial’ in ensuring that hospital services are accessible ([ 16 ]: p.1). The need for ‘culture change’ was the most commonly reported recommendation from the participants in our study, but the views of the participants about how this should be brought about differed from research based on the perspectives of hospital staff. Our study participants advocated staff taking time to listen to disabled people themselves, the provision of staff training about the needs of disabled people, and systems and processes to be in place to clearly record a disabled person’s needs – all issues close to their experiences as disabled people accessing healthcare. A large scale study of culture and behaviour in the NHS in England [ 30 ] summarised strategies for creating positive cultures as listening to staff and encouraging them to be involved in decision making, problem solving and innovation; providing staff with helpful feedback; taking effective, supportive action to address system problems when improvement is needed; fostering good teamwork; and ensuring that staff feel safe, supported, respected and valued at work. Perhaps we should add the word ‘patient’ to the word ‘staff’ in the summary above to emphasise that a culture in which patients as well as staff feel listened to, involved in decision-making and respected and valued is a culture which will work well for both patients and staff.

The good practice examples shared by disabled people in this study highlight the need for hospitals to review, share, and learn from such examples, including the strategies used to enact them, in order to promote and evidence how hospitals provide reasonably adjusted care, and to help embed positive change [ 5 , 31 ].

Participants in our study recommended involving disabled people themselves in service improvements. When Trusts review how reasonable adjustments are provided in their services, they must focus on listening to, and understanding, the perspectives and experiences of disabled people themselves [ 10 , 15 , 20 , 22 , 23 ]. For disabled people’s insights to contribute to meaningful service change, hospital services need understand the importance of working cooperatively with disabled patients [ 32 ].

Most of the existing research about the provision of reasonable adjustments by hospitals relates to people with intellectual disabilities [ 7 , 15 , 16 , 20 , 21 ], what is original about our paper is that our research builds on these findings from a pan-disability perspective. In 2008, the Department of Health (England) stated that ‘if services and health outcomes are improving for people with learning disabilities, they are likely to be improving for other groups at risk of health inequalities’ ([ 17 ]: p.6). Learning from the experiences of people with intellectual disabilities can therefore provide a ‘benchmark’ for the care of other disabled people accessing hospital care.

Our study clearly highlights that research about the provision of reasonable adjustments by hospitals for disabled people is a significant issue requiring future research. Specific aspects that future research could cover include: i) the proportion of the patient population that requires the provision of reasonable adjustments; ii) the most commonly required adjustments needed by hospital patients and their cost; iii) the input required by hospital staff, systems and processes, and their cost, to ensure that hospitals are consistently and effectively meeting the requirements of the Equality Act 2010, in particular the anticipatory duty to make reasonable adjustments.

Strengths and limitations

There are a number of strengths and limitations of this study. One strength is its consideration of different impairment groups in the provision of reasonable adjustments. The Equality Act 2010 and its concept of reasonable adjustments is not disability-specific, so exploring the commonalities and differences across different impairment groups can be instructive. Another strength of the study is the inclusion of the voices and experiences of disabled people and their recommendations for change.

There are some potential limitations to the study too. All participants identified themselves as disabled, but research into attitudes towards, and experiences of, disability has shown that disabled people vary as to whether they perceive themselves to be ‘disabled’ or not. The Office for National Statistics Opinions Survey in 2012 [ 33 ] included a question asking those who came under the Equality Act 2010 [ 6 ] definition if they thought of themselves as disabled, and 62% did not. Mont [ 34 ] suggests that the self-identification of disability generates the lowest prevalence rates of disability. Further potential limitations are that participants were recruited via existing disability and health organisations, and all participants were able to verbally report their views and experiences with little help. The consequence of these potential limitations is that the experiences described in this paper may come from relatively independent disabled people who have a particular interest in highlighting or changing health care practice, or who feel empowered to ensure that they receive reasonably adjusted care. Although we tried to ensure diversity of participants, such as in terms of gender, region and impairment, their stories cannot be considered representative of all disabled people’s experiences. Further, all participants were asked to describe an experience of accessing hospital care from within the past 2 years. Their experiences may therefore not reflect recent initiatives to improve the provision of reasonable adjustments for disabled people in hospitals.

In England, hospitals are required to make reasonable adjustments for disabled patients accessing care. Some disabled participants in this study reported evidence of effective reasonably adjusted care, but this was not common, and the overall picture was mixed. Gaps remain in how reasonable adjustments are provided for disabled people accessing hospital care. It is important for hospital staff to listen to the perspectives of disabled people about the provision of reasonable adjustments and make improvements as necessary. Hospital staff could also do more to share good practice in relation to the provision of reasonable adjustments to effectively inspire and embed positive change.

In this paper, we have used the term ‘disabled person’ rather than ‘person with a disability’. While we appreciate that international readers may prefer terminology acknowledging the person first, the UK interpretation of the social model of disability regards ‘disability’ as a form of social oppression which individuals experience in society. This interpretation argues that a disabled person is not a ‘person with a disability’ as disability is not a characteristic that is part of, or owned by, the individual themselves, but is instead shaped and changed by how society is experienced.

While we have used the term ‘reasonable adjustments’ in this paper to reflect the terminology of the Equality Act 2010, international readers may be more familiar with the term ‘reasonable accommodations’.

Abbreviations

Magnetic resonance imaging scan

National Health Service

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Acknowledgements

The authors wish to thank our advisory group for helping us shape the study and its materials.

This work was supported by the Economic and Social Research Council grant: ES/M008339/1 ‘Tackling Disabling Practices: co-production and change’.

The funding bodies agreed the design of each study but played no role in the collection, analysis, and interpretation of data or in writing the manuscript.

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Read, S., Heslop, P., Turner, S. et al. Disabled people’s experiences of accessing reasonable adjustments in hospitals: a qualitative study. BMC Health Serv Res 18 , 931 (2018). https://doi.org/10.1186/s12913-018-3757-7

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Most black people in UK face discrimination from healthcare staff, survey finds

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Most black people living in the UK have experienced prejudice from healthcare professionals because of their ethnicity, with younger people feeling especially discriminated against, a survey has revealed. 1

Almost two thirds (65%) of black people who responded to a survey said that they had experienced prejudice from doctors and other staff in healthcare settings. This rose to three quarters (75%) among black people aged 18 to 34.

The report was commissioned by the Black Equity Organisation, a national civil rights organisation launched earlier this year to tackle systemic racism in the UK. The survey received 2051 responses from people of black or mixed black ethnicity, including 1014 people aged 18 to 34.

Vivian Hunt, the organisation’s chair of trustees, said, “The key to change is identifying and recognising the reality of black communities across the country. This research and our other report, Brick Wall after Brick Wall , provides a clear picture of what black communities experience daily and will help shape our work and campaigns moving forward.

“We will work in partnership with communities, businesses, grassroots organisations, and allies to deliver systemic change that will ensure that these experiences become a thing of the past.”

The report cited particular issues around the experience of black women in maternity care and the diagnosis of certain special educational needs. Survey participants felt as though they were not seen and that their concerns were not listened to or incorporated into their treatment decisions.

“Specific to Black women, participants felt that due to the misguided stereotype of ‘strong Black women,’ practitioners were dismissive of their pain,” the report said.

It noted that this finding had also been reported by the NHS Race Health Observatory, 2 which found evidence of negative interactions, stereotyping, disrespect, discrimination, and cultural insensitivity across maternity services. This made many women from ethnic minority groups feel “unwelcome, and poorly cared for.” It also found that black patients in the UK were subject to more intrusive treatments, such as injectable antipsychotics, and were less likely to be offered talking therapy for severe mental illness.

Black African individuals were at least six percentage points more likely than those from other ethnic groups to believe that they were being discriminated against by NHS professionals because of their ethnicity.

Honest conversation

Reflecting on its findings, the organisation called for an end to prejudicial decisions being made by healthcare professionals when treating and diagnosing illness in black patients.

“In particular, in response to the findings of this report BEO [the Black Equity Organisation] will focus on improving maternity care statistics, and supporting healthcare providers to ensure that people with special educational needs and mental health issues are being catered for appropriately without suffering a detriment because of their race,” it said.

Miriam Deakin, interim deputy chief executive of NHS Providers, described the findings as “deeply concerning.” She said, “Racism has no place in the NHS. Time and again, we hear how patients from ethnic minority backgrounds have worse experiences of healthcare than their white counterparts.

“This must be addressed, and everyone—including the NHS and government—must work together to do more to tackle racism within health and care. It is only by recognising these facts and having an honest conversation about racism, its structural roots, and its impact, that we can achieve change.”

• ↵ Swords B, Sheni R. Systemic change required. Black lived reality: why we need systemic change. 26 Sep 2022. https://blackequityorg.com/state-of-black-britain-report/
• ↵ Kapadia D, Zhang J, Salway S, et al; NHS Race & Health Observatory. Ethnic inequalities in healthcare: a rapid evidence review. Feb 2022. https://www.nhsrho.org/wp-content/uploads/2022/02/RHO-Rapid-Review-Final-Report_v.7.pdf

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StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-.

StatPearls [Internet].

Diversity and discrimination in health care.

Brandon M. Togioka ; Derick Duvivier ; Emily Young .

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Last Update: May 2, 2024 .

• Continuing Education Activity

The United States is a diverse country and a place for people of all backgrounds. However, discrimination against individuals and groups belonging to minority identities persists, leading to negative outcomes for patients and healthcare professionals. Clinicians are responsible for addressing inequity in the medical profession, a part of the American healthcare system. Several decades ago, diversity and discrimination were considered terms within social justice or social movements. However, in recent years, there has been a notable shift in focus within the healthcare field towards understanding and addressing social determinants of health. Remaining cognizant of these cultural shifts is relevant for healthcare community members at all levels to remain productive and contribute within the field.

This activity reviews the concepts of diversity and discrimination and highlights the interprofessional team's role in improving care for patients from diverse backgrounds through medical education. Participating clinicians are equipped with historical milestones, past and present events, and recommendations to inform policy that aims to increase diversity and decrease discrimination within healthcare settings.

• Identify different manifestations of diversity and discrimination, and analyze their impacts on health care.
• Interpret the different levels within the healthcare system on which bias and discrimination occur.
• Evaluate relationships between bias and negative patient outcomes in the healthcare system.
• Implement interprofessional guidance that healthcare systems can adopt to increase diversity and reduce disparities.
• Introduction

Diversity is broadly defined as the inclusion of varied attributes or characteristics. In the medical community, diversity often includes healthcare professionals, trainees, educators, researchers, and patients from diverse backgrounds, including race, ethnicity, gender, disability, social class, socioeconomic status, sexual orientation, gender identity, primary spoken language, and geographic region.

Discrimination in health care is defined as negative actions or lack of consideration directed towards an individual or group based on preconceived notions about their identity. Individuals do not have to belong to a marginalized group themselves to experience discrimination against that group. Discrimination can occur based on perceived membership. Furthermore, harm does not need to occur for discrimination to exist. A group may be discriminated against if it consistently receives lower-quality healthcare services compared to another group solely because of their race, ethnicity, gender, disability, social class, socioeconomic status, sexual orientation, gender identity, primary spoken language, or location of residence.

Although discrimination can manifest for various reasons, this activity focuses mainly on gender, ethnicity, and race-based discrimination in the healthcare workforce. Discrimination occurs in all workforce segments, not limited solely to health care. However, health care presents a unique scenario because both care providers and recipients may face discrimination simultaneously, underscoring an inherent power dynamic. [1]

• Issues of Concern

The 2 main types of discriminatory acts are macroaggressions and microaggressions. Macroaggressions are more overt and radical forms of discrimination deeply rooted in a society or within a system. Examples of macroaggressions include the forced relocation of Japanese-Americans into internment camps during World War II, laws preventing equal suffrage rights for women, and the Tuskegee study, where Black men were intentionally misled and denied standard treatment for syphilis.

Laws such as Title VII of the Civil Rights Act and the Americans with Disabilities Act (ADA) prohibiting unequal treatment based on race, sex, and disability have decreased overt racism within healthcare settings. In areas where overt racism has declined, awareness of microaggressions has increased. Microaggression can be defined as short, everyday insults or snubs that can be barely perceptible or difficult to define but convey a negative message to individuals because of their identity or affiliation with marginalized groups. [2]  Microaggressions, often unintentional and rooted in unconscious biases, can be challenging to identify, easily concealed, and delivered involuntarily through verbal or non-verbal communication. [3] [4]  Microaggressions are often delivered during one-on-one interactions, whereas macroaggressions are rooted in systems. [5]  

Despite their insidious nature, microaggressions have perceptible negative impacts on the quality of life of oppressed individuals or groups. Increased exposure to microaggressions increases the likelihood of feeling discriminated against. Microaggressions may damage the mental health of oppressed individuals, causing lower self-esteem, poorer self-care, and increasing susceptibility to substance abuse, depression, suicidal ideation, and anxiety. [6] [7] [8] [9]  Growing evidence suggests that repeated exposure to microaggressions is associated with a higher incidence of hypertension, increased frequency of hospital admission, and more severe diabetes-specific distress. [10] [11]

The killing of George Floyd in 2020 in a succession of incidents of police brutality, in conjunction with the disproportionate burden of COVID-19 in communities of color, has elevated the national consciousness regarding diversity and discrimination. [12] Americans are more aware that structural racism is causing healthcare disparities. [13]  Research demonstrates that discrimination and bias exacerbate and create new healthcare disparities. [14] As a result, the national conversation surrounding racism has resulted in the recognition of racism as a public health crisis. [15]  As the national discussion surrounding diversity, discrimination, and structural racism continues, several matters have been brought to the forefront, as discussed below.

A Multicultural Society Requires a More Diverse Workforce

As our country's racial and ethnic diversity increases, the need to diversify our healthcare workforce increases. The need to diversify health care has been present since the inception of the first women and individuals of color entering higher medical education. [16]  The Flexner report significantly slowed the inclusion of Black physicians in the American medical system. [17] [18]  Flexner concluded that medical education within African American schools was deficient, resulting in the closure of 5 of 7 African American medical schools. [19]  Since then, the ability of Black and Brown clinicians to reach higher workforce levels has increased, but discrimination is still prevalent, intersecting with several marginalized identities. Many years later, when COVID-19 disrupted the American healthcare system, a rise in discrimination towards Asians and Asian Americans necessitated a focus on increasing social support from students to the professional level. [20]  Concerning diversity outside of race, individuals belonging to gender-diverse and disabled groups face significant exclusion. [21] [22]

Progression From Individual to Structural Racism

Racism is a social construct that emphasizes phenotype. According to the National Museum of African American History & Culture, individual racism, interpersonal racism, institutional racism, and structural racism are delineated. Individual racism is most directly related to the biases that we hold, and interpersonal racism is an expression of these biases between individuals. Institutional racism is reflected in the policies and procedures of an organization. Structural racism is the cumulative effect of these forces across systems and between institutions or organizations. The promotion of health equity and a decrease in health disparities requires addressing individual and interpersonal racism and dismantling institutional and structural racism. However, the complexity of such endeavors should be recognized, given the hundreds of years of history where individual and structural racism have prevailed within health care. [23] [24]  The decision regarding Dobbs v. Jackson in 2022 that overturned Roe v. Wade reignited the conversation surrounding the relationship between the healthcare system and reproductive health. [25]  In 2023, the ruling against affirmative action for college admissions had an unknown impact on higher medical education in the following years. [26] The conversation in many sectors about the potential effects of structural racism, particularly concerning artificial intelligence, is prevalent in 2024. [27]

Bias, Stereotype Threat, and Negative Outcomes

Increasing awareness in the United States involves recognizing that implicit bias contributes to poorer healthcare outcomes for patients of color. [28]  Racist behavior negatively impacts patient well-being. In addition, stereotype threat is a psychological state where individuals underperform due to their fear of fulfilling negative stereotypes. The hypothesis is that stereotype threat impairs the performance of minority students on standardized tests such as the Medical College Admission Test (MCAT) and the United States Medical Licensing Examination (USMLE). [29]  Stereotype threat has been found to cause psychological harm among students and trainees of color. [30]  Several efforts continue to examine the approaches to teaching trainees about healthcare disparities. [31] [32]

• Clinical Significance

Individual racism is a personal belief in the superiority of one's race over another, often leading to discriminatory behavior driven by implicit and explicit biases. Historically, racist beliefs regarding biological differences between Black and White people were used to justify slavery and medical experimentation on men and women of color. The legacy of this false belief in fundamental and innate biological differences between Black and White people is still present in medical practice, leading to health disparities such as the undertreatment of pain in Black patients.

A research study published in the Proceedings of the National Academy of Sciences of the United States demonstrates the connection between false beliefs about biological differences between Black and White people and racial bias in pain assessment and treatment recommendations. In this 2-part study, medical students and residents endorsed beliefs suggesting biological differences between Black and White patients. These beliefs included that the nerve endings of Black people are less sensitive compared to White people and that the skin of Black people is thicker compared to White people. Furthermore, medical students and residents who held these beliefs rated the pain of Black people lower compared to that of White people and, therefore, made less accurate treatment recommendations. [28]  Historically, similar beliefs were endorsed by the Nazis during the Holocaust regarding tolerance of pain levels that led to some of the most brutal documented recollections of medical experimentation based on identity. [33] [34] [33]

Structural racism is rooted in societal, historical, and cultural norms that support racial group inequality. As an institution, medicine has adopted and implemented practices and policies that promote structural racism. Race-adjusted algorithms are based on the historic racist belief that Black people are physiologically different. For instance, race-corrected estimations of glomerular filtration rate are based on the unscientifically supported belief that Black people are more muscular and have higher creatinine levels. Consequently, this may result in a higher reported estimated glomerular filtration rate, interpreted as a better renal function for anyone identified as Black. As a result, there may be delays in diagnosing renal disease and reduce access to transplantation. [35]  

At a systems level, the failure to identify the health implications of discrimination may result in developing a system promoting health disparities. For example, an algorithmic bias was identified in a medical artificial intelligence program that considered past healthcare costs when predicting clinical risk. Consequently, due to White patients having greater healthcare expenditures compared to Black patients, they were determined to have higher risk scores compared to Black patients. These scores may have led to more referrals for White patients to specialty services, perpetuating both spending discrepancies and race bias in health care. [36]  In the United States, maternal mortality rates are disproportionately high, and patients who identify as female face numerous barriers to accessing equitable medical care, ranging from the use of imaging modalities, surgical recommendations, and perception of self-efficacy in decision-making to the final diagnosis, now termed gender-affirming health care. [37]  Disability-conscious health care is also emerging in the continued movement toward equity in clinical practice. [38]

The root cause of discrimination based on race, gender, or other identifying social constructs has led to racism, inequality, and inequity concerning the process of patient history intake, evaluation, and diagnostic testing. Within each specialty, the effect of discriminatory beliefs is exhaustive, but some commonalities can be observed. Considering the past pitfalls of experimentation on marginalized groups and restructuring the approach to medical education in the present is the path presented in this activity.

• Other Issues

Medical Education on Diversity in Healthcare

This section is intended primarily for healthcare professional educators. However, all educators may benefit from both peer- and self-education.

The Liaison Committee on Medical Education and the Commission on Osteopathic College Accreditation require medical schools to promote diversity and prohibit discrimination. However, researchers have yet to confirm whether such actions affect health outcomes. A search in PubMed for education studies about diversity for healthcare professionals did not yield results generalizable to the effectiveness of any specific strategy. Before considering healthcare outcomes, an intermediate step is raising the awareness of bias to modify perceptions and behaviors at the student level; research in this area is abundant and described below.

Valuing cultures other than oneself involves a willingness to learn and self-reflect continuously. When discussing the ability of education to change perceptions and behaviors, the terms cultural humility, cultural awareness, and cultural sensitivity are more appropriate compared to cultural competency, as competency implies having attained a finite body of knowledge. [39]  The former terms present the knowledge as existing on a continuum that requires progress toward inclusion.

Educational Approaches

Inclusive education emphasizes that healthcare professionals should consider patients in their unique individual contexts and acknowledge that a situation may be experienced differently by different patients. What matters in making informed decisions are an individual's health perspectives, requirements, and experiences, not their ethnicity, race, or social status. [40]  A critical skill for all healthcare professionals is to understand patients not by employing any particular label but instead by employing an attitude of curiosity about how each patient’s experiences and context shape their views and behaviors.

Developing a healthcare professional's critical consciousness, defined as a reflective awareness of the self, others, and the world and a commitment to addressing issues of societal relevance in health care, is believed to be an effective approach to education about diversity than teaching facts or emphasizing the use of an individualized approach to patient care. [41]  Healthcare professionals should also undergo training in recognizing their own implicit biases and biases of the institutions and systems in which they work. This training includes understanding the composition of the leadership workforce and how decisions are made within their workplaces.

Recent review articles provide general guidance and practical examples for educators.

• In 2007, Smith et al developed recommendations for curricula on health disparities and suggested that the broad goal of such curricula should be to eliminate health disparities.
• In 2016, Dogra et al published a curriculum guide and reviewed examples of education about diversity. They recommended integrating education concerning diversity throughout the curriculum and highlighted the importance of self-reflection in learning and teaching related concepts.
• A multidisciplinary approach incorporating many education modalities typically enhances knowledge retention. Similar to Objective Structured Clinical Examinations (OSCEs), simulations, in particular, may resemble real-life clinical encounters as applicable to situations of discrimination. [42] [43]

Despite the lack of large-scale evidence for best practices, many smaller studies focused on particular target populations or particular interventions. Some evidence suggests that multimodal, active learning formats, such as a combination of faculty role modeling, interprofessional rounds, and OSCEs, can yield gains in learners' knowledge, skills, and attitudes. [44]  Lectures are useful but have potential pitfalls and should be followed by hands-on practice with feedback and formative evaluation. The discussion format is likely more effective compared to lectures alone in helping learners explore and develop their attitudes on cultural issues.

When education about diversity is integrated longitudinally throughout a curriculum, appointing someone to oversee all curricular modules can maximize cohesion and minimize redundancy. Smith et al proposed that a curriculum committee not assign all teaching roles to faculty persons of minority demographics because that arrangement can imply that issues related to discrimination are only a problem for minorities to navigate rather than the responsibility of all healthcare professionals. [32]

Diversity education is a unique curricular topic. Healthcare team members at all expertise levels, from trainees to experienced clinicians, require the same foundation that builds a skill set. If education is considered a shared responsibility, professionals from diverse backgrounds can engage in mutual learning and collaboration.

Healthcare professionals have made many false assumptions about the relationship between cultural variables and medical outcomes, unnecessarily reinforcing negative stereotypes. Teaching typical characteristics of minority groups frequently promotes stigmatization without promoting healthcare outcomes. This approach makes culture a proxy that prevents healthcare professionals from noting the person behind the patient. Categorizing patients based on cultural characteristics assumes that culture and its impact on persons' responses are fixed. Healthcare professionals should instead realize that patients have dynamic views that vary based on their immediate contexts and recognize that identity classifications such as gender, age, class, disability, sexuality, race, and ethnicity are multifaceted.

Faculty preparation is crucial for effectively teaching diversity education; educators who are well-intentioned but unprepared can inadvertently promote students' and patients' stereotyping. Microaggressions embedded in curricular content create an unsafe climate for cultural minority students. Emphasizing minority patient characteristics as inconsistent with the privileged majority's norm marginalizes minority patients and paints them as a problematic other. [40]

Finally, educators should realize that they teach a curriculum implicitly or explicitly. While the planned curriculum describes what educators perceive, the experienced curriculum describes what students perceive. What educators teach students unintentionally is the hidden curriculum, described as a set of influences that function at the level of organizational structure and culture. [45]  The hidden curriculum can have positive effects, such as when an educator role models cultural humility. The hidden curriculum can also have negative effects, such as using clinical vignettes that promote stereotypes and undermining cultural sensitivity training in other parts of the curriculum. [46]  In addition, a lack of diversity among faculty or institutional leaders can project through the hidden curriculum that minorities do not have a role in higher career positions. [31]

Education regarding diversity is not a time-bound goal but rather a journey. The education should provide learners with the opportunity to become actively engaged in fostering a level of critical awareness of the healthcare provider's position of power and privilege in society. [47]  Inclusiveness in a curriculum does not involve adding a few learning activities to the existing curriculum but rather involves a culture shift. [48]

• Enhancing Healthcare Team Outcomes

Based on existing literature and the results of several studies, the hypothesis positing an inverse relationship between discrimination and diversity is recognized. The prevailing belief within the medical community is that discrimination decreases and equity increases if the percentage of underrepresented minorities reaches a critical mass. Evidence suggests that although diversity is a goal, it alone does not create equity. Although more than half the pediatricians and gynecologists in the United States are now women, leadership positions within departments remain predominantly occupied by men. [5]  Men are likelier to be selected for editorial board membership and achieve status as an associate or full professor, department chair, or medical school dean. Men also earn more at each academic rank. [49]  Therefore, diversity does not necessarily impact the distribution of resources within the teaching system.

These results are similar to those found in the nursing profession. The male advantage in nursing has been described as a glass escalator, in which men are put on a fast track and almost pushed to achieve positions that include greater responsibility, higher salaries, and more organizational benefits. [50]  Thus, although diversity is necessary and important, equity is needed to decrease disparities and mitigate the impact of discrimination. 

Although increasing diversity may not eliminate all problems related to healthcare disparities and discrimination, we strongly encourage healthcare systems to promote diversity among clinicians. A larger talent pool, including clinicians with heterogeneous customs, experiences, and problem-solving tactics, can create more innovative approaches to systems-based problems. Individuals within a group may best solve healthcare issues that are more prevalent within that group. Diverse viewpoints enhance patient care and clinical research design, which may lead to improved inclusion. 

Numerous studies have shown that increased clinician diversity is associated with improved healthcare quality. Concordant care, defined as a patient and clinician sharing a common attribute such as race, ethnicity, or gender, has been associated with improved quality of care. Race-concordant patient-physician relationships are associated with improved communication, longer patient visits, greater medication adherence, and higher patient satisfaction scores. [51] [52]  Language and gender-concordant patient-physician relationships have similarly been associated with improved home medication compliance and outcomes. [53] [54]  Such results suggest that patient-physician concordance may facilitate communication and trust.

Poor access to quality care continues to impact minority and low-income individuals in the United States disproportionately. A potential solution is to focus on recruiting and retaining underrepresented healthcare professionals. Underrepresented minority physicians are more likely to serve in areas with a physician shortage and serve underserved groups, including minorities, low-income individuals, and the uninsured. [55] [56] [57]

The following measures are encouraged to be considered by healthcare groups and systems to improve the recruitment and retention of employees from underrepresented groups:

• Eliminate financial barriers to higher education for socioeconomically disadvantaged groups by developing scholarships, grants, and tuition assistance.
• Create mentorship and pipeline programs to increase the number of underrepresented minorities in healthcare careers. When possible, these mentorship pairings should align with the race and gender of participants.
• Provide opportunities for coaching and leadership training for healthcare professionals from underrepresented groups.
• Use transparent processes to select committee members and leaders with diverse backgrounds and viewpoints.
• Provide pay transparency and objective measures for promotion and salary increase.

The following actions are encouraged to be considered by healthcare groups and systems to quell discrimination and accelerate the remedy of healthcare disparities:

• Acknowledge that past discrimination and current implicit biases lead to inequities related to race, gender, ethnicity, sexual orientation, and disability, which still exist in healthcare settings. Progress is limited by denying the existence of discrimination and bias.
• Educate healthcare professionals on the impact of health disparities and structural racism on patient outcomes. Equip healthcare trainees and practicing clinicians with tools and resources to confront macroaggressions and microaggressions.
• Create a zero-tolerance policy for harassment and discrimination that includes a safe reporting mechanism for both the victim and the reporter.
• Increase support for research on healthcare disparities.
• Consider diversity as a subject integrated into medical education rather than an adjunct.
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Disclosure: Brandon Togioka declares no relevant financial relationships with ineligible companies.

Disclosure: Derick Duvivier declares no relevant financial relationships with ineligible companies.

Disclosure: Emily Young declares no relevant financial relationships with ineligible companies.

This book is distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ), which permits others to distribute the work, provided that the article is not altered or used commercially. You are not required to obtain permission to distribute this article, provided that you credit the author and journal.

• Cite this Page Togioka BM, Duvivier D, Young E. Diversity and Discrimination in Health Care. [Updated 2024 May 2]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-.

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