Patient and public involvement for ethnic minority research: an urgent need for improvement

Inequalities in health by ethnicity persist in the UK, and there is a history of health research failing to address the needs of ethnic minorities. The COVID-19 pandemic has further highlighted ethnic health disparities ¹ and emphasised the need for a greater ethnic minority contribution to all aspects of research. Ethnic minority patient and public involvement needs to go beyond just inclusion in research design, but to encompass active involvement in setting research questions, helping shape study design, being co-applicants, actively informing study implementation, data analysis and interpretation, and dissemination of findings.^2,3 A prerequisite for this is the development of a wider patient and public involvement community which is reflective of our growing population diversity.

The tokenistic nature of patient and public involvement

To date, patient and public involvement in research has often been ‘tokenistic’, from the perspective of both researchers and participants. ⁴ As funding bodies increasingly request inclusion of patient and public involvement in grant applications, researchers often include patient and public involvement for the primary purpose of improving the success of the bid and recruiting participants, without placing sufficient value on patient and public involvements as an important part of the complete research process. Subsequently, patient and public involvement is rarely designed to address the needs of all groups or the entire research process, and it often attracts particularly motivated community members, which can limit diversity and equitable representation from seldom-heard communities. As well as increasing representation of ethnic minorities, enabling more evenly distributed power dynamics, with all stakeholders being accountable, is needed to reduce tokenism. Involvement should be anchored on respect for participants, including ethnic minorities, and their ability to make contributions at all stages of research.^5,6

Working with ethnic minority communities

A fundamental point to consider when engaging ethnic minorities in patient and public involvement activities is the need to understand the diversity within ethnic minority groups (e.g. South Asian consists of Pakistani, Bangladeshi, Indian, etc.). There is wide heterogeneity among ethnic minorities that reflect differences in culture, language, genetics, health status and service use. These factors are also reflected slightly differently across different age groups and migration status. ⁷ To adequately capture the broad range of communities among ethnic minorities, researchers have recently advocated for the improvement of ethnicity categorisation in health and social care research. ⁸

Involvement should be reflected in the entire research cycle. ⁹ Core areas to consider when engaging ethnic minorities include addressing barriers to involvement, such as payment for time or accessible locations for meetings; providing clear information about opportunities shared in formats that appeal to different communities; presenting a patient and public involvement process that reflects equality and diversity duties of different groups; and offering flexible engagement options. Additionally, the use of plain language for well-timed and relevant communications, with a broad range of approaches, should be part of the involvement plans and activities. Development of relevant skills among individuals in research management, regulation, leadership and decision-making will also help enhance transparency and gain trust among minority communities. Further suggestions on conducting patient and public engagement with ethnic minority populations include: establishing a rationale for involving ethnic minority patient and public involvement contributors specifically; utilising involvement and engagement strategies that take into account ethnic minority differences; setting up ethnic minority patient and public involvement registers; conducting culturally sensitive patient and public involvement open recruitment and training; using ethnic minority patient and public involvement contributors’ language skills to discuss research relevance and findings; and broadening dissemination beyond academic and policy spaces and into community settings.

Box 1.

How to conduct patient and public involvement (PPI) with ethnic minorities.

1. Provide rationale for involving ethnic minority patient and public involvement contributors specifically

2. Embed involvement at all stages and outline added value of ethnic minority patient and public involvement to the different stages of the research process

3. Utilise engagement strategies that take into account the differences between ethnic minority groups

4. Establish, regularly updated ethnic minority patient and public involvement register and offer open recruitment portals, which can be advertised on community platforms

5. Offer training and capacity building support in formats easily understood by ethnic minorities

6. Use of ethnic minority patient and public involvement contributors for developing data interpretation that offer different insights and identify aspects of research relevant intended ethnic minority users of that research

7. Use ethnic minority patient and public involvement contributors’ language skills to discuss research findings more widely within the target population(s) and to devise culturally appropriate dissemination strategies.

8. Broaden view of dissemination beyond academic and policy spaces

The role of ethnic minority community members in patient and public involvement groups and panels should not simply be for the direct and back translation of the research agenda to plain English, but should also reflect culturally relevant translation which is only achievable through focused engagement. ¹⁰ For instance, the patient information sheet (PIS) needs to have content validity through focus groups and consultations with community representatives. Including ethnic minorities in this process would ensure cultural, religious and social considerations related to these groups are adequately considered. In addition, co-design approaches to adapt and develop suitable engagement strategies should also be valued, as some ethnic minorities feel over-researched but neglected in research planning, and see little benefit from this to their communities. ¹¹

Increased representation is needed

Adequate representation of all ethnic groups needs to be an integral part of research.^12,13 This is particularly important for patient and public involvement related to applied health research, as this should reflect the population that the research is designed to benefit. Scientific journals, funders, policymakers and stakeholders should actively encourage and support the presentation of ethnic minority patient and public involvement evidence in research planning and dissemination using guidelines for assessing study quality and impact. ¹⁴ Inclusion of ethnic minority patient and public involvement, which should comprise both environmental and social planning, may increase researcher and resource burden. Therefore, a commitment to ethnic minority patient and public involvement will need to be reflected in resources requested in research funding applications, as additional funds would be required for professional translation into different languages, ¹⁵ and funders need to be receptive to this. Ethnic minority patient and public involvement is also vital at the dissemination stage of research outputs. Having patient and public involvement opinions on research outputs enhances credibility, transparency and validity among the target population.

Now more than ever, we need to address the health inequalities faced by ethnic minorities. To aid the prevention and reduction of these health inequalities, we suggest all future research should, where appropriate, consider how to increase the quality and representativeness of patient and public involvement activities with ethnic minority populations. All types of research need to reflect the population it intends to benefit through diverse and inclusive public involvement and working partnerships with researchers, for mutual advantage. We provide a series of recommendations (Table 1 and Box 1) that can be used to encourage increased ethnic minority patient and public involvement and contribution in research. Considering these factors will help address reported barriers to ethnic minority patient and public involvement activities such as time constraints, lack of previous experience in research, compensation and diversity, usually experienced in research.

Table 1.

Recommendations for increased engagement and evidence of ethnic minority contribution in patient and public involvement (PPI).

Group	Recommendation
Funders and Policymakers	- Encourage explicit consideration for diversity in patient and public involvement - Demand for robust patient and public involvement plan and evidence in research - Include ethnic representation and distribution plan in research grant applications - Advocate for at least one ethnic minority patient and public involvement contributor - Provide additional monetary support for ethnic minority patient and public involvement such as allowing cost for language and culturally appropriate methodology - Allow adequate time and adequate flexible resources - Celebrate success and achievements
Researchers	- Engage communities, in partnership with the patient and public involvement contributors, in patient and public involvement-related activities particularly at the design stage - Establish, over time, a robust ethnic patient and public involvement profile database - Explore various participatory approaches which adopts more co-produced partnership with ethnic minority patient and public involvement to enhance the probability of greater inclusivity - Increase reporting of the extent of involvement of patient and public involvement contributors and their contributions at the different stages of the research process - Provide specific details on barriers, inhibitors and facilitators to ethnic minority involvement, showing perspectives of both ethnic minority patient and public involvement contributors and study participants - Outline recommendations on the best practice of ethnic minority involvement or how ethnic minority involvement could be improved or performed differently from research experience
Ethnic minorities (ethnic minority patient and public involvement contributors)	- Enroll as Service User Peer Researchers - Identify specific groups for research engagement - Offer insights into personal, social or cultural factors, needs and priorities specifically relevant to groups represented - Engage in training, capacity building, co-design of documents, fieldwork, co-analyse data and presentation at conferences and public meetings - Share experience of impact from involvement to encourage wider participation from more ethnic minority communities
Journal publishers	- Increase priority for reporting ethnic patient and public involvement representation evidence - Provide a consistent form of reporting patient and public involvement activities in order to facilitate better quality assessment - Inclusion criteria for reporting on intended patient and public involvement versus actual patient and public involvement - Encourage patient and public involvement reporting section in methods, results and discussion sections - Permit extra word count in peer-reviewed journals