Top Lessons Learned from ADAPTABLE Patient Partners

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ADAPTABLE patient partners, also known as Adaptors, provide input to the study team at every critical step in the research process. Adaptors are passionate about patient-centered research and draw on their personal work and life experiences to improve the study participant experience for current and future research participants. In this issue, we asked the Adaptors to share their top lessons learned from their experiences in ADAPTABLE.

  1. Mutual respect between patient leaders and researchers has helped build an engaged & caring community that improves the research experience for all involved.
  2. Our involvement as patient advisors in research is important because it can help our friends and family in the future.
  3. It is harder than we realized to recruit patients for studies like ADAPTABLE. That is why personal involvement from study participants is so important.
  4. We are encouraged by the participants who share their personal reasons for enrolling in ADAPTABLE and enjoy reading their stories.
  5. Patients have valuable insights about study procedures and how to address challenges. ADAPTABLE is truly an authentic patient-centered study!
  6. We learned researchers can be fun and are real people.
  7. Patient involvement in the beginning of a study can make a friendlier and better study.
  8. Patients shaping study communications has helped to engage our study community.
  9. Being involved in Adaptable has made us feel more empowered and proactive with our own healthcare. We hope this is also true for study participants.
  10. Patients and researchers need to be connected. Patient advisors can help researchers keep patients at the center of research by refining the research questions. The answers to these questions may help improve your quality of life.
  11. A good facilitator or liaison is crucial in helping guide and direct communications between the patient advisors and researchers. Study research budgets should account for the role of a facilitator.
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