The Northern Care Alliance has joined with the UK’s largest kidney research charity – Kidney Research UK – in a landmark approach 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 those of all ethnicities from poorer areas of Salford as well as South Asian communities across Oldham and Rochdale. As well as attempting to break down misconceptions and fears around participating in vital research, the charity and volunteers will be encouraging members of the community to sign up to receive information and invitations to future research projects.
The project operated by the NCA will use the charity’s multi award winning “peer educator” initiative to engage with each group. The mentors, who are recruited from within the communities themselves will embark on a detailed training course to identify taboo topics, share detailed information and explain to at-risk communities the process and the benefits of taking part in research.
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, Asian and minority ethnic 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.
Dr Smeeta Sinha, consultant nephrologist at Salford Royal, said: “We all understand just how vital research into kidney disease is and the individuals who participate help us to accelerate and transform future treatments. 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.”
For many marginalised communities, taking part 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 are often cited as reasons why people from these groups pass on the opportunity to participate in research.
Neerja Jain, health equalities programme manager at Kidney Research UK, said: “Our peer educator approach has seen great success when educating communities on general and kidney health and dispelling scientific mis-information. 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. 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 with the research team looking for people from the lower economic areas in Salford of all ethnicities, as well as members of the Pakistani community in Oldham and those of Bengali origin in Rochdale.
Those who wish to take part should contact Programme Manager, Neerja Jain ASAP by email neerjajain@kidneyresearchuk.org.