Opportunities and challenges in patient-led research in India

Patient and public involvement in research is now an essential component of research activity rather than an optional extra. It is embedded in policy and regulatory frameworks and is often a prerequisite for funding. The Kidney Warriors Foundation (KWF), a non-governmental patient advocacy organisation in India with over 10,000 members initiated a survey on prescription practices and adherence to medications amongst patients with chronic kidney disease (CKD). The project’s core aim was to supplement existing clinical data on prescription practices by capturing the often-overlooked patient experience of medication management. While substantial research exists on how prescriptions are written and clinical outcomes measured, there remains a significant gap in understanding the patient journey- the real-world challenges, decision-making processes, and behavioural factors that lead to medication mishaps, non-adherence, or unintended consequences. Using our experience with a patient led survey conducted by a NGO in India, we share insights and reflections on the opportunities and challenges in patient led research. Whilst these are unique to the Indian context, we believe that there are transferrable lessons for conducting research in other international settings, particularly in the context of ensuring inclusion and equity of access to participation. We have divided the discussion into the steps in the journey of this patient led project namely designing the project with emphasis on priority setting, focus group discussion, pilot testing and ensuring accessibility. This study is a maiden attempt by a non-governmental organisation in India at co-created research where questions, methodology, and dissemination strategies originated from and were shaped by patient priorities, with patients and doctors constituting the steering committee. In addition to the inferences regarding patient reported experience measures on prescription practices and adherence to medicines amongst patients with CKD, the study also offers an insight into a model of patient led research that can inform policy and ultimately improve patient outcomes. Kidney Warriors Foundation, a patient advocacy organisation in India conducted a survey amongst patients with kidney disease about their experience with the prescriptions they get from doctors and the way patients get, store and take their medicines. This is because patients with kidney disease have complex prescriptions often with many medicines. There is not much research about the patients reporting their own experience with prescriptions and their responses and behaviours. The survey was designed and led by patient representatives along with doctors. The results showed that although patients are largely satisfied with prescriptions, there is more to be done to improve the prescriptions and making sure that patients understand the side effects and other details of each medicine. The survey results were shared at the Annual Conference of the Indian Society of Nephrology*. The article discusses how the committee consisted of doctors and patients. The subject of the survey was chosen by the patients. There were small group discussions to decide the content. The survey was tested on a small group of patients and refined further. It was translated by patients themselves into five other languages, and this resulted in 708 patients completing the survey. The survey was shared on social media and at clinic attendances. Despite challenges, this survey is a successful example of close working between patients and doctors to produce research that can improve the health of patients with kidney disease.