Black, Asian and Minority Ethnic (BAME) groups are known to be under-represented and considered an under-served group in research. This lack of representation in research has meant findings are often less generalisable to BAME groups. South Asians represent the largest minority ethnic group in the UK; 7.5% of the total population. Research suggests that this population are more likely to experience physical health conditions such as diabetes and heart disease. Also, that BAME groups generally are less likely to recognise mental illness, seek help and are under-supported by services. My PhD therefore asks, ‘How do males of South Asian origin with long-term physical conditions understand, experience and seek help for emotional distress?’ This involves a systematic review, looking at published research to summarise what is already known; followed by a qualitative study, interviewing male South Asians with diabetes and heart disease, about their understanding of emotional distress and if and how they seek help; and GPs to explore their perspectives on supporting males of South Asian origin with mental-physical comorbidity.
How am I working with patients and the public?
To ensure that my PhD is relevant to the proposed research participants, it was crucial to form a patient advisory group that included people from BAME communities. The Research User Group (RUG) at the School of Primary, Community and Social Care (Keele University) provides an excellent resource to support Patient and Public Involvement and Engagement (PPIE) in research. However, despite ongoing efforts of the PPIE coordinators, the ethnic diversity of the RUG is limited; this presented a clear challenge at the outset of my PhD.
During the early stages of my PhD, I became involved with a new initiative at Keele called Student-Link which aims to encourage people from BAME communities to join the RUG; it sees students as vital links to connect the School with BAME communities and to share information about PPIE. I attended a Student-link workshop at Keele University and discussed, with other staff and students, ideas to support BAME involvement in research and PPIE. I volunteered to be a BAME PPIE champion. As a champion, I have actively engaged with BAME networks to establish a PPIE group of six South Asian males; members of the group come from a variety of social and economic backgrounds but all share an interest in supporting the development of research.
First patient advisory meeting- outcomes and impact:
The PPIE group felt the research was very relevant to them and their communities. They discussed components of the proposed systematic review and reviewed public-facing study documents for the qualitative study. They suggested improvements to support cultural relevancy and to support participant recruitment. The group suggested recruiting from particular areas of Stoke-on-Trent, local community and faith centres, and advised on times to speak at religious and cultural events to capture the largest audience.
What two key lessons have I learnt to increase BAME PPIE involvement?
First, how to conduct culturally relevant and sensitive patient advisory group. The approach that I have taken will influence my own research but also inspire members of the group to talk within their networks about the benefit of taking part in PPIE. Second, how to use my existing networks to establish a PPIE group. As a member of the BAME community, I am linked in with relevant networks and groups; this helped “open the door” to conversations about my PhD and the role of PPIE in research. I will share lessons learned with the Keele RUG team.
I hope the patient advisory group will continue to contribute in my PhD research and that they continue to be members of the RUG and support other research within the School; therefore ensuring BAME representation in future research.
Finally, I should acknowledge the support of the Keele PPIE team, whose usual processes such as support, advice and coordination of meetings was invaluable to this experience.