This chapter outlines the importance of why research needs to reflect meaningful ethnic diversity in research design and recruitment. We will discuss some of the factors that have both contributed to and perpetuate some of the barriers to effective representation of minority ethnics in research, and we will provide some recommendations and principles that can be adopted to improve the involvement of minority ethnics in research which are by no means exhaustive, but offer a framework of forethought in your research design and application.
With the recommendation that the term Black, Asian and Minority ethnic (BAME) be discontinued as it homogenises ethnically diverse groups [Reference Sewell, Aderin-Pocock and Chughtai1], the term minority ethnics (ME) will be used as the preferred terminology in this chapter, though interchangeable with the more current term of ethnic minority, in recognition that white people also have ethnicities. One simple definition of minority ethnics is that of ‘a population group with an ethnic origin different from that of the majority population of the country’ [Reference Modood, Berthoud and Lakey2].
South Asians are the largest minority ethnic group in the UK according to the 2021 census, of which the three largest ethnicities are of Indian, Pakistani, and Bangladeshi backgrounds and form 9.3% of the population. The second largest Black ethnicities of African-Caribbean and African backgrounds comprise 4.2% [3]. However, minority ethnics have a disproportionately greater burden of certain common diseases such as diabetes [Reference Meeks, Freitas-Da-Silva and Adeyemo4],[Reference Francis, Bennett and Ferguson5], hypertension, stroke [Reference Chaturvedi6], and cancer [Reference Singh and Jemal7] and yet are consistently under-represented in clinical and health research, particularly with regards to metabolic, cardiovascular, cerebrovascular diseases and cancer.
The prevalence of diabetes is 7.69% in South Asian ethnicities and 5.58% in Black minority ethnics compared with 5.04% in white ethnicities [Reference Pham, Carpenter, Morris, Sharma and Petersen8] and the age and gender prevalence of hypertension is 2.6 in African ethnicities, and 1.68 in South Asian ethnicities when compared with white ethnicities [Reference Cappuccio, Cook, Atkinson and Prevalence9].
The management of many of these chronic conditions has been guided by good research that is mainly based upon white populations with the generalisation of these findings to other minority ethnics. However, there are many examples where these generalised health interventions are either inaccurate or ineffective because of the under-representation of minority ethnics in the original studies [Reference Gill, Plumridge, Khunti and Greenfield10, Reference Allmark11]. For example, diabetes lifestyle guidelines previously based the risk of diabetes with a body mass index of 30 kg m2 but more recent research, has shown differential risks occur at lower BMIs than current NICE [12] guidance, even within South Asian ethnicities with Bangladeshi having risks at 21 kg m2, Pakistani at 24 kg m2, Black Afro-Caribbean at 26 kg m2, and Black African at 29 kg m2 [13]. This further emphasises the need for disaggregation of ethnicity data to inform tailored health interventions spawned by health research.
This disaggregation of data is necessary to identify differential cultural, social, and health needs of those concerned. This was highlighted in the Final Report on Covid-19 Impact Enquiry [Reference Suleman, Sonthalia and Webb14] where the disaggregation of ethnicity data showed the greatest mortality risks to be in Black African males during the first wave, and then Bangladeshi and Pakistani males in the second wave compared with white ethnicities.
The response to medication can also manifest ethnic differences. In the treatment of hypertension, for example, the use of antihypertensives show diuretics and calcium blockers to be more efficacious in Black ethnicities in well-designed RCTs [Reference Khan and Beevers15], whilst the three main South Asian populations have a similar response as white ethnic groups to ACE inhibitors, beta blockers and angiotensin receptor antagonists conversely, are less effective in Black ethnicities when used as a monotherapy.
The generalisability of health interventions that are potentially flawed due to lack of minority ethnic representation can mean poorer health outcomes if not disaggregated due to ethnicity. For example, subunit vaccine immunity elicited a poor immune response to the Covid-19 vaccine in only 0.8% of white trial participants but 37% in self-identified Asian-Americans [Reference Liu, Carter and Gifford16], when data were broken down by ethnicity.
In the UK, similar ethnic differences were not adequately studied, as only 5.7% of minority ethnics were recruited into Covid-19 vaccination trials, although there was a higher morbidity and mortality in the two largest ethnic groups of South Asian and Black ethnicities [Reference Etti, Fofie and Razai17].
Older minority ethnics are even more under-represented with the added burden of ageism and yet have an even higher burden of diseases that list amongst the leading causes of death. Their involvement in dementia research, the seventh highest cause of death globally and a leading cause of disability and socioeconomic burden in the world [18], remains woefully low, and yet the number of people living with dementia is expected to rise to 139 million by 2050 with a doubling of the current prevalence in minority ethnics to 40% [Reference Shin and Doraiswamy19] and epidemiological and targeted research suggesting differential ethnic risk factors and clinical phenotypes in minority ethnics [Reference Barnes and Bennett20]. This perpetuates flawed and inaccurate understanding of differential risk factors and potential treatment developments [Reference Kalaria, Maestre and Arizaga21].
It is, therefore, imperative that in order to determine and evaluate appropriate intervention strategies and improved health outcomes in minority ethnics that clinical research has a truer representation of minority ethnics in health research and clinical trials.
Despite little research into the factors that contribute to this under-representation, the few studies that exist give some insight to into the possible barriers that need to be understood to avoid perpetuating these pitfalls in future research [Reference Lip, Barnett and Bradbury22], and are summarised below.
Contributory Barriers to Engagement of Minority Ethnics
1. Historical mistrust stemming from unethical research on non-consenting slaves during the colonial era and explicit racial exploitation of incarcerated and poorer socioeconomic groups is well documented as part of the African-American history [Reference Washington23] and less known in Native American history in the USA [Reference Hodge24], and include the Tuskegee, Holmsberg and Sloan-Kettering Institutes, where non-consensual experimentation and punitive clinical trials on Black inmates of these prisons and penitentiaries occurred in the 1960s and even extending into the 1990s when unethical medicinal trials were conducted on ethnic minorities of black and Hispanic origin aged 6–10 years old at the Columbia University’s Lowenstein Centre.
2. Cultural mistrust of the term ‘medical research’ equating to many minority ethnics as synonymous with being ‘guinea pigs.’ This perception was found across all socioeconomic groups [Reference Scharff, Mathews and Jackson25]. The term ‘clinical trials’ is also considered to have a greater negative connotation and perceived as different from ‘medical research,’ suggesting the need for these terms to be unified in a more culturally relevant and meaningful way.
3. Experiential mistrust due to poor health experiences in clinical pathways where minority ethnics might receive poorer health education or care due to communication difficulties, or racial discrimination [Reference Waheed, Hughes-Morley, Woodham, Allen and Bower26] seen as differential ease of health access, poorer patient-centred care, receipt of less health information about their condition, or negative experiences with health professionals [Reference Hussain-Gambles, Atkin and Leese27]. This fosters mistrust when approached about research [Reference Hughes-Morley, Young, Waheed, Small and Bower28] and perpetuates a greater lack of insight of the potential benefits of health research for these marginalised groups [Reference Redwood and Gill29].
4. Perceptual mistrust that research benefits white participants, or the findings are not generalisable to minority ethnics [Reference Scharff, Mathews and Jackson25]. There is often a fear of how the research data might be misused due to complex consent forms that do not address these concerns. This is further amplified by a lack of awareness of the value of health research or the opportunities for their engagement in relevant health research [Reference Hussain‐Gambles, Atkin and Leese30].
5. Institutional racism is expressed within the present legal, political, and social frameworks as perpetuating the historical vestiges of racial discrimination to minority ethnics [Reference Bazargan, Cobb and Assari31]. Within the current discussion, this manifests as a disinterest in research institutions to better engage with minority ethnics by providing more appropriate health interventions with relevance to minority ethnics [Reference Bécares, Kapadia and Nazroo32]. It also is seen as an unwillingness to meet the different cultural and ethnic needs of minority ethnics participants by research institutions adopting a ‘one-size-fits-all’ recruitment strategy that perpetuates disengagement.
6. Systemic racism manifests as the use of non-inclusive designs and recruitment strategies. Many studies preclude minority ethnics by designs that exclude participation unless they are able to speak English and do not make provision for translators and interpreters or employ less effective recruitment techniques that discourage minority ethnics [Reference Corbie-Smith, Thomas and George33]. Some health professionals show a lack of understanding for need for appropriate representation of minority ethnics or, when this is not the case, a tendency to approach minority ethnics from higher socio-economic backgrounds that speak English [Reference Hussain-Gambles, Leese and Atkin34].
7. Religious misperceptions that certain religions do not support research participation although this is not actually prohibited in Islam, Hinduism, Sikhism, or Christianity. However, without clear community links and engagement with religious leaders, this is perpetuated. This can further extend with fear of ingesting forbidden substances (Gora) in some religions that recruitment strategies need to allay with a culturally competent workforce.
8. Health illiteracy, whether perceived or real, requires greater investment to address the lack of knowledge and information that many minority ethnics have as a result of poor health education provided about their health conditions or poor health relationships with primary or secondary physicians [Reference Hussain-Gambles, Atkin and Leese27]. This requires time to explain the rationale and salience of the research to the individual, but also to dispel misconceptions of their health disorders [Reference Ford, Howerton and Lai35]. Culturally, a preference to consult and involve family members or community and religious leaders to support decision-making needs to be factored as well as the additional translation and interpretation costs into non-English languages or other preferred modalities of communication need to be factored in the methodology.
9. Translation and interpreter costs are often excluded from the research budget to favour the successful application of a research grant. Where interpreters are used, they must be trained appropriately to offer the accuracy needed to allay any concerns and obtain valid consent accuracy [Reference Plumridge, Redwood and Greenfield36]. Translations must also be valid with independent forward and reverse translations to ensure linguistic accuracy and validity [Reference Fryer, Mackintosh, Stanley and Crichton37].
10. Ad hoc partnerships are where the community is approached only when researchers deem it convenient to conduct research, which leads to the lower likelihood of engaging minority ethnics in future research. It is rather essential to invest in genuine reciprocity between minority ethnic communities and research institutions that aim to build trusting relationships [Reference Gill, Plumridge, Khunti and Greenfield10], identify key health concerns in the community, and facilitate co-design of health research deemed pertinent to minority ethnic groups [Reference De Las Nueces, Hacker, DiGirolamo and Hicks38] and offer a greater probability of engagement [Reference Indorewalla, O’Connor, Budson and Jackson39].
11. Inequality of access such that the timings and venue of research studies tend to discriminate against minority ethnics who are more likely to have employments that are less accommodating about taking time off to engage in research, more complex childcare and elder care provision, as well as transport constraints to visit research institutions. This might require outreach designs with bilingual recruiters, recruiters of similar ethnicity or well-trained in cultural competency [Reference Sheikh, Halani and Bhopal40]. More flexible processes to allow more equitable access to research such as out of hours access to permit a family member to attend or conduct research in a more accessible and trusted community setting.
12. Inequality of publicity where the usual means of media advertisement by virtue of the modalities of communication used and generic content are perceived to be both less direct and focused on white counterparts in themes and language used.
13. Complex consent forms that are usually comprehensive and detailed but not always comprehensible to minority ethnics where English is not the first language or is not in plain enough English to allow comprehension and trust of the process. Even when translations are facilitated, little provision is given to cater to different literacy levels or avoid ambiguity by presenting the key points of information to aid understanding. There is no reason why a variety of consent forms for a study cannot be presented in pictorial [Reference Sheridan, Halpern and Viera41] or audio-visual modalities [Reference Lloyd, Johnson and Mughal42], as well as plain language, large font, or figurative depiction [Reference Sudore, Landefeld and Williams43].
14. Lack of reciprocity that many studies on research hesitancy echo is the lack of planned feedback to minority ethnic communities of the results of studies. This can perpetuate mistrust of the research aims and processes. Altruism is as prevalent in minority ethnics as their white counterparts, but feedback of research findings instills both greater confidence and tangibility of the process and consolidates the potential benefits for the specific minority ethnic group [Reference Lip, Dempster and Jain44]. This further builds genuine community relationships that work as partnerships to identify minority ethnic community priorities for health research as well as emphasise the potential benefits [Reference Nicholson, Kreuter and Lapka45].
15. The stigma of certain chronic diseases such as diabetes, mental illness, and dementia can preclude engagement of minority ethnics where community engagement occurs in identified places of worship such as mosques, temples, and synagogues and might be counterproductive where public disclosure is overt. This might require formation of alliances with accepted religious or community leaders to dispel health myths, targeted health education or the development of processes that enlist trusted health professionals or volunteers to aid destigmatisation [Reference Ejiogu, Norbeck and Mason46]. These might be longer term projects that can be dovetailed with research methodologies that provide participant preferences and increased flexibility, such as home visits to maintain privacy [Reference Rooney, Bhopal and Halani47].
16. Random sampling is considered a gold standard in research to avoid bias, but these population databases rely on healthy volunteers and individuals with health conditions that consent to their contact about salient research, and so is less likely to pick up minority ethnic communities that mistrust research, lack health literacy, have inherent fears about research participation or are discriminated against so are not offered to be on such databases [Reference Waheed, Hughes-Morley, Woodham, Allen and Bower26]. In these situations, the formulation of specific registries of minority ethnics that have specific morbidities to allow more targeted research in disease conditions that disproportionately affect them is more appropriate, or the use of snowballing methods [Reference Bamidele, McGarvey and Lagan48] that allow the building of trust and engagement across several generations as well as horizontally amongst relatives and friends [Reference Hughes, Fenton and Hine49].
17. Interventional studies offer a further source of research hesitancy where the concern of receiving a placebo in a clinical trial might lead to failed recruitment as a result of mistrust in the process of randomisation. Statistically, as minority ethnics are under-represented on major databases for reasons above, there is a real likelihood of a lower probability of treatment arm selection. Designs of some interventional studies could be modified to allow the control group to receive another treatment intervention or receive the intervention after phase 3 of the trial [Reference Yancey, Ortega and Kumanyika50] as well as using community outreach and co-design processes to explain the need for randomisation and potential benefits in evaluating specific interventions.
18. Timings of appointments can conflict with domestic and employment commitments with higher rates of socio-economic pressures on minority ethnics restricting availability to attend during the daytime in favour of other priorities. Many studies have found flexible after-hours timings improves recruitment of minority ethnics [Reference Scharff, Mathews and Jackson25, Reference Hussain-Gambles, Atkin and Leese27, Reference Ejiogu, Norbeck and Mason46], and the additional provision of transportation and access to outreach community centres further enhances recruitment.
19. Rigid exclusion criteria can discriminate against minority ethnics who already have a higher burden of physical comorbidities, which limits their recruitment. Whilst study designs should attempt to remove as many confounding conditions as possible, consideration should be given to more sophisticated statistical designs that allow naturalistic or pragmatic designs. Review the need for such rigid exclusion criteria, aware that the higher comorbidity in many of the larger populations of minority ethnics will then limit their recruitment [Reference Morse, Simon, Besch and Walker51].
20. Lack of minority ethnic research studies hinders the understanding of differential drug responses, biometrics, and clinical phenotypes. Designing more minority ethnic dedicated research trials to ascertain differences of biometrics, drug responses, or phenotype of clinical presentations would offer a targeted approach that not only improves health outcomes, but builds closer community research partnerships and improved expertise of researchers in using dedicated individualised approaches more conducive to recruiting and engaging minority ethnics rather than the formal and impersonal approaches that are less effective [Reference Ejiogu, Norbeck and Mason46]. The potential benefits are also more evident and pertinent to the minority ethnic group [Reference Gill, Plumridge, Khunti and Greenfield10]. Where studies are not targeted to minority ethnics, the study design should ensure the collection of ethnicity data to allow appropriate analysis and disaggregation of findings.
21. Lack of cultural competency can be described as the failure to respond effectively to the cultural, linguistic, racial, ethnic, religious, and other diversity factors of people in a way that validates and recognises the value of the individual [Reference Papadopoulos, Tilki and Lees52]. If extended to research, cultural competency, therefore, requires a knowledge and understanding of the health-seeking behaviours of an individual that would facilitate the understanding and reasoning for a minority ethnic participant to be involved in a study. Cultural incompetency of research investigators may present additionally as ignorance of the importance of ethnic diversity in recruitment and the expression of unconscious biasing that maintains a stereotype that minority ethnic participants are more difficult to engage or are less interested in research.
22. A lack of diversity within the workforce contributes to the limited diversity of research workforces at clinical sites. There are a number of socio-cultural, political, and systemic reasons for limited staff diversity in public healthcare in the UK. Under-representation of minority ethnic recruiters in research can impact in the earlier stages of rebuilding trust between public healthcare sites and local ethnic communities as minority ethnic staff are perhaps more likely to succeed in gaining the trust of patients due to greater natural cultural understanding and more successful in recruitment [Reference Huerto53]. This can also provide added linguistic benefit to overcome language barriers. Therefore, there is an urgent need to increase the diversity of both the researchers designing clinical trials, and those recruiting and carrying them out.
Solutions to Increase Ethnic Diversity and Inclusion in Clinical Research
The formation of a trusting relationship between the researcher and the minority ethnic community is key to the successful recruitment to studies. This cannot be built upon Creates ad-hoc relationships but needs the establishment of longitudinal and sustained equitable partnerships that genuinely explore the needs of the specific minority ethnic group within a framework of research co-design and co-ownership of the study question deemed salient to the community. These should aim to tackle health burdens that have a tangible impact on morbidity, health literacy, quality of life, and improved health outcomes.
These principles are all encapsulated within a community-based participatory research (CBPR) [Reference Holkup, Tripp-Reimer, Salois and Weinert54] and facilitate trust-building and the benefits of ripple effects for sustained research in these communities [Reference Jagosh, Bush and Salsberg55].
1. Invest in the development of community partnerships by engaging with community leaders, community organisations, and religious leaders and institutions to gain an understanding of the community needs, fears, and aspirations for their health needs.
2. Formulate study questions pertinent to the community by co-design and agreement of terminology, language diversity, and non-verbal modalities such as audio-visual and pictorial modes to engage with all literacy and educational levels in the specific minority ethnic group.
3. Present the basis of the study to identified community organisations and groups to identify any additional apprehensions and agree on the mode of preferred dissemination of results so there is transparency regarding how the data collated and analysed for the study are used.
4. Identify community sites that are easily accessible and acceptable to the minority ethnic group, including the use of home visits.
5. Identify community and religious events that would facilitate health promotion, dovetailed with research opportunities of the study to help destigmatise or debunk any health myths.
6. Ensure recruitment staff are culturally competent by incorporating any additional advice and information feedback about the cultural, religious, and ethnic beliefs of the specific minority group by community and religious leaders, so these are respected and understood.
7. Ensure consent forms are clear and comprehensible to all literacy levels and where possible to provide in pictorial and audio-visual modalities of communication.
8. Ensure there is diversity of ethnicity with either shared cultural backgrounds or language amongst the recruiters augmented by the use of facilitators from the local community including religious leaders, primary care clinicians trusted by the minority ethnic community. It is important to ensure that even if not of the same ethnicity, the staff have cultural competency.
9. Establish the community preferences for out-of-hours access, transport provision, or other incentives to minimise the impact of employment, family care, and financial conflicts and pressures that might reduce engagement with the study.
10. Provide appropriate conduits to disseminate the findings of the study agreed upon as salient for the minority ethnic community at the inception of the co-design to maximise the impact of any health related changes. For example, community events and religious festivals in the preferred media modality.
Simple Steps to Make Your Research More Diverse and Inclusive
The following steps have been drawn from the solutions mentioned earlier in the chapter and from some of the tools highlighted in Figure 4.1.
Figure 4.1 A framework to ensure diversity and inclusivity in research.
Figure 4.1Long description
The steps outlined are as follows: design research protocol to be inclusive: think about what ethnic groups should be included in the study, utilise include ethnicity framework, think carefully about inclusion and exclusion criteria, ensure study materials are inclusive and welcoming; community engagement – build trust: consult with stakeholders or community want to target, inform them about the potential impact of the study, try small group information sessions, co-led by researchers and community members; study delivery: build a diverse research team, diversify ways to access the study – choice and flexibility, consider the need for translation; feeding back: communicate study findings in an understandable way, feedback during and after the study.
Useful Tools to Ensure Your Research Is More Inclusive
There are a growing number of tools that researchers can use to help them design and conduct more inclusive research. We have looked at four in detail below and have included additional tools at the end of the chapter in Appendix 1.
INCLUDE Project
The Innovations in Clinical Trial Design and Delivery for the Under-served (INCLUDE) project can be utilised by researchers and clinical sites as a guideline for improving access to clinical research for under-served groups. INCLUDE offers many recommendations and goals that can increase inclusion for minority ethnic groups, for example ‘educating funders on barriers to participation’ and a ‘nationwide publicity drive about clinical trials and why they matter’. Similarly, the project has also offered example questions that can aid researchers in designing inclusive research, evaluating inclusivity at their clinical sites, and helping delivery teams implement beneficial interventions to improve inclusion. Some of the questions are highlighted below.
Questions to guide research teams in designing inclusive research:
1. What are the characteristics/demographics of the population which your research looks to serve?
2. How will your inclusion/exclusion criteria enable your trial population to match the population that you aim to serve?
Questions to guide funders and reviewers in assessing inclusiveness of research:
1. Does the study population reflect the target population who live with the condition/conditions?
2. If not, are the differences potentially of importance or can be otherwise justified? And if there are differences, are these addressed by pre-specified and adequately powered subgroup analyses?
Questions to guide delivery teams in considering how to improve inclusion of under-served groups:
Diversity Site Assessment Tool (DSAT)
The DSAT consists of three sections – site overview, site recruitment and overview, and patient-focused services and is given to sites so that they can self-evaluate their performance in ‘utilising best practices to support enrolling diverse patient populations as well as implementing diversity best practices among the site practice’ [Reference Foster56]. Figure 4.2 shows an example section of the SCRS DSAT. Accurately identifying the specific areas in which clinical sites are succeeding or failing will provide organisations with clear areas to tailor policy solutions around, increasing the likelihood of implementing effective policies that improve ethnic diversity and inclusion in clinical research.
Figure 4.2 Diversity Site Assessment Tool (DSAT) (Adapted from [Reference Foster56]) CC BY 4.0.
Figure 4.2Long description
The table consists of 13 rows and 8 columns. It reads as follows: row 1: section 1: site overview, no opportunity to observe 0, hardly ever 1, rarely 2, sometimes 3, often 4, nearly always 5, always 6; row 2: 1. Our site knows the demographic make-up of our community; row 3: 2. Site knows the actual patient demographics of the clinical trial participants; row 4: 3. Investigator, study coordinator, and/or support staff are culturally representative of the patient population; row 5: 4. Site has staff that can utilize commonly used words in the community for medical discussion; row 6: 5. Site staff knows diversity goals; row 7: 6. Site tracks progress toward established diversity goals and knows what marketing or outreach strategies works to make them successful; row 8: 7. Site can provide diversity metrics upon request to sponsor at site evaluation; row 9: 8. Site has mechanisms formal or informal to make staff culturally aware and sensitive to the patient population; row 10: 9. Site management team supports the recruitment of diverse patients; row 11: 10. Site has a process to identify and address barriers; row 12. Sub-totals and row 13. Total score for site overview 0 to 60.
NIHR Race Equality Framework
Similar to the DSAT but targeted at an organisational level, the newly developed NIHR Race Equality Framework is a ‘self-assessment tool designed to help organisations improve racial equity in health and care research’. The Framework provides 50 self-assessment questions covering five key components of research: individual responsibility, leadership, public partnerships, recruitment, and systems and processes. Organisations can use their responses to these questions as a way to evaluate to what extent they adopt models of good practices for improving health equity for under-served groups, namely ‘African, Asian and Caribbean heritage communities’.
Individual responsibility encourages individuals to assess their past and current behaviours, and specifically how these may be excluding under-represented groups from research. Comparatively, the leadership component of the Framework questions how effective senior members of organisations are in driving improvements in ethnic diversity and inclusion at clinical sites. The third component of the Framework is particularly important and refers to public partnerships. This section has briefly mentioned the importance of ‘co-production’ in the designing of interventions in research, whereby continued dialogues and collaboration with minority ethnic communities and organisations will better enable sites to both ‘understand barriers to participation in research’ and how to improve inclusion for these groups you are partnering with. The fourth component of the Framework refers to recruitment. This assesses whether clinical sites accurately use available data to understand their local demographics and identify the specific subsets of under-served groups that need a tailored recruitment drive to increase their participation in clinical studies. Additionally, it then questions whether they understand why recruitment and participation is low, and how best to improve it. The final component relates to systems and processes. This encourages sites to formulate a standardised model of good practice, whereby they adopt specific processes and routines when evaluating why participation rates are low, and how beneficial interventions will be designed and implemented.
The Centre for Ethnic Health Research
The Centre for Ethnic Health Research provides support for individuals and organisations seeking to reduce ethnic health inequalities and to increase the limited participation of under-served ethnic groups in research [57]. It provides a range of free online resources that have been frequently utilised by NIHR Applied Research Collaborations (ARCs). One tool offered is the Equality Impact Assessment (EqIA), a toolkit for research sites and health organisations that aims to help improve equality analysis and outcomes, increasing the visibility of under-represented groups in research [Reference Hart58]. Similarly, there are educational videos on topics such as ‘cultural competence in research’ and ‘patient and public advice on ethnic diversity in research’. Ultimately, the Centre for Ethnic Health Research website should be consulted regularly as it provides strong foundational knowledge on the struggles of recruiting minority ethnic groups in health and social care research and offers potential implementable tools to help limit this exclusion they face.
Conclusion
Good and well-designed research contributes to greater knowledge and innovative clinical interventions and approaches. It offers patient choice and the opportunity to engage in cutting edge interventions and forms a consensus on evidence-based practices in health.
Better representation of minority ethnics in clinical and health research is a vital component in the provision of evidence-based tailored health interventions for the whole population, but the current paucity of inclusive studies further limits the acceptance by minority ethnic groups that are already over-burdened by common chronic diseases. These under-served groups are sometimes referred to as ‘hard-to-reach’ communities which is a term that has a negative connotation that places the fault upon minority ethnics, but Tudor-Hart [59] additionally states that ‘the individual requiring the greatest effort to attend a health service is also the one with the greatest need’. The same should be considered in health research.
The National Institute of Health Research (NIHR) has stipulated that all phase 3 trials should include subgroup analysis of both gender and ethnicity to help identify differences in treatment regimens but more important is to ensure these findings are sufficiently powered by larger representation in studies. This requires a concerted and affirmative approach that encourages minority ethnics to engage on their terms rather than a one size fits all approach [60]. Additionally, the UK Research Governance Framework states that research evidence should reflect the diversity of the population. However, it is ultimately down to the researcher to act upon the need for a collaborative approach to addressing these inequalities amongst all under-served and vulnerable groups from the inception and completion of the research with all that is entailed to overcome the existing barriers and disparities.
Importantly, whilst this section has examined some potential solutions to the outlined barriers to ethnic diversity and inclusion in research, it is far from exhaustive. Other barriers continue to exist and continue to perpetuate health inequalities for certain ethnic groups. Therefore, this section should be considered as a starting point for further investigation into how best to increase access and opportunities in research for under-represented ethnic groups.
