R. Raghavan, A.Farooqi, K.Jutlla, B.Desai, N. Patel, A.Wilson Recruitment and research participation of Black Asian and Minority Ethnic citizens in health research in the UK: A tool kit for good practice R. Raghavan, A.Farooqi, K.Jutlla, B.Desai, N. Patel, A.Wilson De Montfort University, Leicester City Clinical Commissioning Group, University of Leicester (rraghavan@dmu.ac.uk) MERH World Congress 17-19 May,2018 Edinburgh 1

Context UK Population East Midlands / Leicester Diversity and Health Hard to Reach/ Easy to ignore Policy / Researcher awareness MERH World Congress 17-19 May,2018 Edinburgh

Ethnicity and Health Do we understand the diverse needs of black and minority ethnic communities? Do our services meet the diverse needs and aspirations of black and minority ethnic communities? Do we provide an appropriate and professional service to black and minority ethnic communities? Do we achieve equally high outcomes for all ethnic groups in all our various activities? MERH World Congress 17-19 May,2018 Edinburgh

Aim Develop a toolkit to guide and support those wanting to conduct research with BAME populations and consequently increase their representation in UK health-related research MERH World Congress 17-19 May,2018 Edinburgh

What do we know already Language use and ability; participants’ English speaking ability, translation and interpretation issues, and illiteracy. Socio-cultural factors that can make it difficult to determine the extent to which problems are concerned with a person’s ethnic identity. Participants’ lack of knowledge about research, mistrust towards research and health professionals and the stigma associated with certain health conditions. Practical issues: the cost implications of research participation and competing priorities for participants. MERH World Congress 17-19 May,2018 Edinburgh

Method Conduct Literature review Workshops with community members, users, carers, researchers and professionals Draft good practice Took kit Consult users, cares, community members, researchers and professionals Finalise tool kit MERH World Congress 17-19 May,2018 Edinburgh

Tool kit themes Consideration of the communities which your research needs to involve. Undertaking effective patient and public involvement (PPI) in research Conducting effective recruitment in BAME communities Ensuring cultural competency in the conduct of your research. Providing effective feedback to research participants Recognising the importance of recruiting BAME communities in research Involving BAME communities in preparing grant applications MERH World Congress 17-19 May,2018 Edinburgh

Consideration of the communities which your research needs to involve Have you considered the characteristics/demographics of the population your research will include? If you are investigating a particular issue or problem, have you considered the data regarding differences in prevalence or impact on particular groups, and taken these into account in your protocol? Potential sources of information: Prevalence data e.g. Public Health observatories, Local Health Watch, Health and Wellbeing Boards, Health and wellbeing strategies GP practice data Research literature MERH World Congress 17-19 May,2018 Edinburgh

Have you outlined in your proposal why it is important to ensure adequate representation of BAME groups in your study population? Does your study methodology ensure that BAME groups will be adequately represented in your study? Have you considered any possible barriers or difficulties in ensuring the groups you need, will in fact be recruited to your study? Case Studies Top Tips MERH World Congress 17-19 May,2018 Edinburgh

Conclusion Online Tool kit Impact Monitoring/ Evaluation MERH World Congress 17-19 May,2018 Edinburgh