Boosting diversity in research studies
Research studies must be representative of the groups of people they are designed to help. We’re supporting a new project to help create more diversity among kidney research participants
Recruitment for a landmark new study is underway across the areas of Salford, Oldham and Rochdale. With the support of Kidney Research UK, the Northern Care Alliance NHS Foundation Trust is embarking on a novel project to help increase representation of marginalised groups within major kidney research projects.
Focusing on groups most at-risk of kidney disease, the project will attempt to engage people of all ethnicities from poorer areas of Salford as well as the Pakistani communities in Oldham and Bangladeshi communities across Rochdale. Whilst attempting to break down misconceptions and fears around participating in vital research, volunteers will be encouraging members of the community to sign up to receive information and invitations to future research studies.
The Salford Project will take a unique approach by exclusively using the charity’s multi award-winning ‘peer educator’ initiative to engage with each group. The peer educator volunteers are patients (or anyone with a connection to kidney disease) recruited from within the communities they are engaging with. They will embark on a detailed training course to identify taboo topics, share detailed information and learn how to explain to at-risk communities the process and the benefits of taking part in research.
Working with communities
Kidney Research UK’s health equalities programme manager, Neerja Jain, has been involved in previous peer educator activities and is a keen advocate of the method. “Our peer educator approach has seen great success when educating communities on kidney health and dispelling health and scientific mis-information,” she says. “Not only do we make sure that the people we recruit are representative of the areas we want to engage with, but our volunteers are often well-known members of the community and trusted amongst their peers.”
Strategies are put in place to ensure that the peer educators’ voices are able to resonate and influence the communities they represent. Unlike similar educational schemes, Kidney Research UK’s programme seeks to recruit those who not only represent their community but are also engaged and influential members of their communities. This focus may mean that recruitment for each project is longer, but volunteers’ influential profile ensures that the message around participating in research is more likely to be listened to.
Improving representation of those at risk
Currently, people from poorer communities are more likely to develop chronic kidney disease, progress faster towards kidney failure and often die earlier with the disease than people from higher economic backgrounds. In addition, those from black and South Asian populations are more likely to progress faster towards kidney failure while also being less likely to receive a kidney transplant. These statistics further highlight the importance of the project’s ambition to increase representation of these marginalised groups in future research projects.
“We all understand just how vital research into kidney disease is and the individuals who participate help us to accelerate and transform future treatments,” said Dr Smeeta Sinha, consultant nephrologist at Salford Royal Hospital, part of the Northern Care Alliance NHS Foundation Trust. “Unfortunately, the patient population that we currently recruit rarely reflects the diverse make-up of the kidney community, with the vast majority coming from white and middle-class backgrounds. With a patient pool which better reflects the overall kidney population, we can ensure that the future of kidney treatment is applicable and appropriate for all patients.”
Among a number of recommendations from Kidney Research UK’s Health Inequalities report, is the key need to increase participation in renal research from under -represented groups.
For many marginalised communities, participating in research continues to be a taboo topic. Historic fears around experimentation, concerns over whether research will be supported by their religion and a general mistrust of the institutions of government and the health system feed into why people from some groups pass on the opportunity to participate in research.
Neerja Jain continued; “It is impossible to pin the hesitancy towards research down to a single issue, rather communities often cite a number of historical, cultural and faith-based concerns that prevent them from taking part in vital research. Through the Salford Project however, we hope to be able dismantle these barriers with an evidence-based approach through our trusted and passionate volunteers.”
Recruitment for the project volunteers is still ongoing. If you are from the lower economic areas in Salford, or if you are a member of the Pakistani community in Oldham or from the Bengali community in Rochdale and wish to participate, please contact programme manager, Neerja Jain by email: [email protected] or call or message: 07810 555 844.