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.