We cannot transform kidney treatments until researchers and health professionals understand what it’s really like to live with kidney disease. That’s why, with the launch of our strategy in 2020, we pledged to boost patient involvement in everything we do. This year we took some major steps towards that goal.
The remit of our Lay Advisory Group – made up of volunteers living with kidney disease – was expanded last year. Now these expert patients will have a greater influence on the way we and the wider kidney community operates. They will help us dial up the patient voice in our decision-making, and we’ll support them to get a seat at the table in other kidney networks and organisations.
Kidney patient Kudz Munongi, pictured right, is one of a group of newly appointed Kidney Research UK community ambassadors, who are supporting others and raising awareness for the charity and our research.
Involvement in research
We’ve long included members of our Lay Advisory Group in deciding which research applications we fund, but this year we went further. In January 2021, our grants panels began hearing not just from scientific reviewers, but also from our new research network volunteers, to inform their funding decisions. The 22 volunteers are all kidney patients who assess the applications through the lens of their lived experience. This helps us to make sure we’re funding research into issues that really matter to people living with kidney disease. It also helps researchers to better design and deliver their studies, and are considerate in what they ask of the patients involved.
Our research network volunteers were recruited largely through Kidney Voices for Research. This is our online community of patients who want to stay up to date with scientific progress and hear about opportunities to contribute.
More opportunities than ever
Getting involved in research is just one of the ways in which people can volunteer. We now have an even wider range of roles to suit all kinds of people. Last year we recruited the first members to our reader panel, set up to review and feed back on our communications. These patients will help us improve a whole range of materials, from webpages and flyers to the report you’re reading right now!
We also created opportunities for community ambassadors; people like Kudz who are becoming the face of the charity in their local area. These roles suit people who want to raise awareness of the importance of kidney health, kidney disease and research by talking to groups, businesses and schools in their community.