Why should you engage patient stakeholders in your research?

Patients and the public are end-users of successful clinical research and experts in the personal experience of living with a disease or condition. As such, they have a lot to contribute to the research process. Traditionally, patients have been viewed purely as subjects of research, a very important role. However, they have more to offer the research enterprise beyond enrolling in a study. Listening to patients, caregivers and advocates share their experience of navigating a disease or condition can help you improve your research design and protocol, improve your research funding applications, and identify barriers and facilitators to research enrollment, retention and use of research results in clinical care. These stakeholders can help researchers build studies that:

  • are more responsive to patient needs.
  • answer research questions that are relevant and important to patients.
  • are easy to find and enroll in.
  • encourage participant retention.
  • assist patient decision-making.
  • are implemented to improve the lives, health and well-being of patients and their families.