Patient and public involvement in cancer care and research: the Indian perspective

Biomedical research aims at improving human health through scientific studies, and is crucial for medical progress through identifying more effective ways to prevent, diagnose and treat disease. Patients (and public) are integral elements in medical research, and no research is meaningful unless it is patient (or person) centered. However, conventionally, the role of patients and the public has been restricted to only being participants in research. There is growing awareness that to be truly person-centered, research must include the patient and public voice at every stage of the research process, including priority setting, asking the right question, designing and conducting the study, interpreting and disseminating the results and ensuring that research informs policy. While this framework is reasonably well-established in some high-resource countries, it is at a very nascent stage in resource-poor settings. In this article, we examine the role of patient and public involvement in cancer care and research, with a focus on the Indian perspective.