People in economically deprived and ethnic minority communities have the highest rates of kidney disease and complications in the UK.
Despite that, far fewer people from these communities take part in the many research studies that seek to improve diagnosis, treatment and care.
That’s why experts from Northern Care Alliance NHS Foundation Trust (NCA) and Manchester Metropolitan University (MMU) have started a new programme to understand and overcome barriers to research involvement of kidney patients from underserved communities.
The two-year programme is being funded by the National Institute for Health and Care Research (NIHR) and led by Professor Phil Kalra from NCA and Professor Anya Ahmed (MMU).
Research ambassadors
They will be working with research ambassadors with lived experience of kidney disease, representing some of our main ethnic communities. These ambassadors will be trained on how to interview patients considering cultural sensitivity such as religious beliefs. Together the ambassadors will conduct up to 40 interviews with patients with kidney disease to find out how we can best meet their needs and how to encourage them to take part in research.
To minimise any language barriers, both the Participant Information Sheet and the Participant Informed Consent Form have been translated into Urdu, Bengali, Hindi and Gurmukhi Punjabi – the first NCA-sponsored study that has used such translated materials.
Reflecting needs
Prof Kalra explained: “Research is crucial for improving health and care and it’s also vital that we undertake research that fully reflects and addresses the needs of all communities. We know that people in economically deprived and ethnic minority communities face different barriers to taking part in research, including differences in communication requirements, understanding what research is and concerns that research would interfere with their care.
“In our own Salford Kidney Study – a major study with more than 4,000 people giving samples and data about their kidney disease – we’ve seen that while 17% of the population that we serve for kidney care are from Pakistani, Bangladeshi, Indian, Black and Non-British Caucasian communities, 97% of the participants in the study are of British white origin.”
Tool-kit for researchers
The new study will include interviews with people in Salford, Oldham, Bury, Rochdale, Bolton and Wigan from the six main ethnic communities that we serve. There will also be a wide age range and balance of type of kidney care (dialysis, transplant and non-dialysis chronic kidney disease patients).
In addition, the research team will interview members of the renal and other research teams at NCA to learn what obstacles they think prevent greater engagement and what would give them more confidence to approach patients from diverse ethnic community backgrounds.
Answers from the interviews with patients will be used to design a tool-kit for researchers to use in the future and for bespoke social media information campaigns directed to the communities to help patients with kidney disease take part in research.
The team hope these will be applicable for use in other medical specialties and in other regions of the UK.