Case study: Inclusion expert helps to steer NIHR research by offering “a different perspective” as a Public Contributor

Mercy Kaggwa, the Equality, Diversity and Inclusion Advisor at Norfolk Community Health and Care (NCH&C), has been helping to steer health and care research as a Public Contributor for the National Institute for Health and Care Research (NIHR) Clinical Research Network (CRN) East of England since 2020.

After studying journalism at university, Mercy worked in the Not-for-Profit sector before joining the NHS, first at the Addenbrooke’s Charitable Trust before moving to the Norfolk & Norwich Hospitals (NNUH) Charity, then NCH&C.

Mercy first became involved in research whilst working at NNUH during the COVID pandemic where they were also the staff network Co-Chair. A colleague approached Mercy for help in researching how COVID has affected minority ethnic communities, as information in this area was particularly scarce among both the public and NHS staff. Mercy explains:

“I really believe in supporting our NHS and not just as an individual, but as a Black person. Most of the information that our medical professionals use to treat people that look like me is based on results of people that do not look like me.

“I very much wanted to learn more and see if there was a way that I can support and offer a different perspective that others may not have thought about. When I see how much my contribution inspires other people, it feels like a big deal. We need people to open their minds and see that different perspective.”

Mercy’s background in the Not-for-Profit sector and involvement with community groups has offered a valuable insight into how research can be introduced to communities that have been underrepresented in the past.

“Being able to be in the room and have conversations with expert people is essential for those of us from different cultural backgrounds, however currently the majority of these rooms hold an imbalance of perspective which needs to be rectified for the benefit of our healthcare” Mercy said.

Mercy lives with Crohn’s disease, a lifelong condition where parts of the digestive system become inflamed. Realising that research into this condition was underrepresented in ethnic minority groups, Mercy says that this experience highlighted an important issue regarding research and health inequalities.

“I'm absolutely fascinated by medical research and understanding the fact that people who look like me face barriers and inequalities in the healthcare system. We don't come openly to our doctors, so certain conditions are not well known.

“I need people who look like me to be able to feel confident that we're going to be treated well and that we're going to have answers, and if not answers, we're going to have the support. That's why medical research is so important because without it, our life span is much shorter than everybody else's.”

To find out more about how you can get involved in research visit www.bepartofresearch.uk.