KHI Current Project

Patient Engagement Through Patient Advisory Boards

To further patient input in KHI, the Patient and Family Partnership Council (PFPC) partners with KHI Board of Directors (BOD) to advise and make recommendations on KHI member efforts so that the patient's voice, experience, and involvement is meaningful and effective in biomedical research and product development. The PFPC has developed resources on how to build successful Patient Advisory Boards (PABs). PABs are critical for successful patient-centered clinical trials and research studies that are diverse, equitable, and inclusive.

An Introduction to Patient Advisory Boards: Educational Video Series

People with kidney diseases should have the opportunity to join PABs with a clear understanding of their role, responsibilities, and expectations. This series of educational videos conveys the importance of PABs and what aspects to consider when joining.

1. What is a Patient Advisory Board and why should I join?
   Begins with an introduction to patient advisory boards and their functions while discussing questions patients may have about joining.
2. Why would I be selected to join a Patient Advisory Board?
   Understand why patients are selected to join patient advisory boards for clinical trials and the importance of the patient voice.
3. Do I need a degree to have my experience considered by a Patient Advisory Board?
   Hear why the patient experience is the key consideration for patient advisory boards.
4. What is the time commitment when joining a Patient Advisory Board?
   Meeting schedules and questions to ask before joining are described.
5. Will I receive compensation for participating in a Patient Advisory Board?
   Why patients and others should be compensated for the time they commit to serving on patient advisory boards.
6. What are the responsibilities as a member of a Patient Advisory Board?
   Understand the responsibilities of different patient advisory boards. Learn about the variety of ways patients may be brought in to advise on a patient advisory board project.
7. Do I need to sign a confidentiality agreement or COI form when joining a Patient Advisory Board?
   Understand the importance of confidentiality agreements. Hear examples of conflicts of interests and reasons for signing confidentiality agreements.
8. Will my information remain secure once I join a Patient Advisory Board?
   In a continuing discussion on the importance of maintaining confidentiality agreements, learn how patient advisory boards request permission before sharing the information of its participants.