Overcoming barriers to research in patients with kidney disease
Research type
Research Study
Full title
Understanding and overcoming barriers to research involvement of patients with kidney disease from underserved communities
IRAS ID
341007
Contact name
Philip A Kalra
Contact email
Sponsor organisation
Northern Care Alliance NHS Foundation Trust
Duration of Study in the UK
1 years, 11 months, 30 days
Research summary
Kidney disease is a common condition that affects around 1 in every 10 adults over the age of 35 years. People from “underserved ethnic communities” – and by this we mean people who have been denied opportunities in society, partly because of their ethnicity in this case - are more likely to be diagnosed with kidney disease.
In our Centre, we run a study called the Salford Kidney Study which helps us learn about the health and well-being of people living with kidney disease over many years. Participants in the study complete questionnaires and provide blood samples. Between April and October 2022 of the 210 patients that we approached who agreed to take part only 3% of patients in the study came from underserved ethnic communities. Most patients (97%) in the study are White. This does not reflect reality because 17% of local people with kidney disease are from Pakistani, Bangladeshi, Indian, Black and Non-British White communities. We asked patients for their views about taking part in kidney research and they told us about different barriers such as differences in communication needs; understanding what research is; and concerns that research would interfere with their care. Indeed, non-English speaking patients were less likely to take part in our survey.
We believe that if we can address these barriers, we can help more people living with kidney disease take part in research. Therefore, in this study we will:• Stage 1: Approach 100 patients with kidney disease to ask them to:
o take part in the Salford Kidney Study and,
o sign up to a database (‘Research for the Future’) that provides people with details of research opportunities.• Stage 2: Recruit and train four people, three of whom are from underserved ethnic communities, and who themselves have kidney disease, to become ‘research ambassadors’. Between them they will conduct up to 40 interviews with patients with kidney disease from people from these communities to help us understand why they might not take part in research.
• Stage 3: Use the answers from the interviews to design a toolkit for researchers to use, and an information campaign for the communities, to find different ways of helping patients with kidney disease take part in research. The aim is to benefit present and future generations.
If this study succeeds, it could help us find new ways to help patients with other conditions (diabetes, cancer) take part in research. We will share our findings with patient groups, healthcare professional and researchers in written reports, presentations and on social media.
REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
24/SW/0050
Date of REC Opinion
16 May 2024
REC opinion
Further Information Favourable Opinion