Developing guidance for researchers on how to involve and partner with ethnically diverse communities in research

Patient, Public, Involvement and engagement (PPIE) is now a common requirement in research for many funding bodies1 and critical for primary care research. Although it is now common practice for researchers to incorporate PPIE in their work, most PPIE networks tend to be white, middle-class individuals2. This lack of diversity could bring into question the validity of the research, as results may not be reflective of the general population in primary care, or the population that deals with illness burden the most.

At Aston University, we worked in collaboration with Birmingham Community Healthcare NHS Foundation Trust (BCHC) Community Connexions programme to develop guidance to help researchers to embed more diversity in their work. Community Connexions is a patient and public engagement programme that highlights the lived experiences of different communities in Birmingham with regards to their healthcare needs, ensuring services can be appropriately refined (https://www.bhamcommunity.nhs.uk/community-connexions/).

The project involved us co-developing the guidance with BCHC community group members through a series of meetings. We held a total of five online meetings (including an initial introductory meeting) with community members from various organisations linked to BCHC. Attendees were offered a £30 gift voucher per meeting as a token of appreciation.

The Project Lead (HH) liaised with the Community Connexions Lead (FZ) to gather interest for attendance. A flyer was produced and distributed via email and WhatsApp group chats.

To start with, we held an introductory meeting to share the project and our aims. This meeting was kept open to anyone for attendance and proved to be an effective way of gathering initial interest in the work. We then held a further four meetings with community members:

Meeting 1 involved identifying the key barriers that exist for people from minority ethnic communities when it comes to participating in research. The meeting also functioned as a second introductory meeting. Different issues arose such as language barriers, compensating participants, communication, and research setting. A draft guidance document was put together and presented to community group members at the next meeting.

Meeting 2 and 3 focused on obtaining feedback on and progressively refining the draft guidance.

In meeting 4, the final draft guidance was presented to group members to allow the opportunity for any final feedback. Potential next steps for the project were also discussed.

Creating the guidance in this manner allowed for the development of a document that was truly reflective of community member perspectives.

The final guidance document is split into sections and covers recruitment, translation, research setting, cultural appropriateness, compensating and keeping in touch with participants. See link to the guidance below.

The most apparent learning from this project is illustrated through the guidance document produced. However, further learning was obtained along the way.

The meetings themselves were a means of engaging groups in the research process. We discovered that the key to having fruitful discussions and developing meaningful guidance lay in building good relationships with group members, both with ourselves and amongst each other. This required more than one meeting and frequent contact to ensure everyone was kept up to date with the progress of the project. Meeting attendees were from a variety of ethnic backgrounds and ages, allowing us to hear different perspectives, also ensuring we produced meaningful guidance.

This guidance provides researchers with a series of steps and important considerations on how to incorporate more diversity into their work.

The project also helped with networking between researchers and PPI groups. It allowed and will allow primary care researchers to obtain the input of diverse ethnic communities into their research. It also raised awareness among people from minority ethnic communities on the research process and how they can be more involved.

In summary, by working closely with PPI representatives from underserved minority ethnic communities, we developed guidance on how to involve ethnically diverse communities in research. In the same way that involving minority communities in research takes time, this guidance also took time to develop and was successfully done through building trusting relationships.

Guidance:

• GUIDANCE: How to include diversity in research in older people 

Acknowledgements:

The following people contributed to this project (listed alphabetically):

Ruqayyah Aziz, Baljeet Baba, Meena Bibi, Dr Christine Burt, Dawn Carr, Shamsun Choudhury, Hafsah Habib, Nimo Hirsi, Jaspreet Kaur, Joy Krishnamoorthy (Flourish), Roger Leek, Professor Ian Maidment, Fartun Mohamud, Assata Owens, Naeem Qureshi, Azra Rasool, Tamanna Rasool, Dr Afshan Salim, Ayan Tifow, Nina Kaur Ubhi, Kevin Wright, Dr Fatima Zakia For any correspondence, please email: i.maidment@aston.ac.uk or h.habib2@aston.ac.uk

References:

1. Hilton A, Megson M, Aryankhesal A, Blake J, Rook G, Irvine A, et al. What really is nontokenistic fully inclusive patient and public involvement/engagement in research? Health Expectations. 2024 Mar 15;27(2).

2. Shimmin C, Wittmeier KDM, Lavoie JG, Wicklund ED, Sibley KM. Moving towards a more inclusive patient and public involvement in health research paradigm: the incorporation of a trauma-informed intersectional analysis. BMC Health Services Research. 2017 Aug 7;17(1).