Research Advisory Councils

These types of Patient & Family Advisory Councils (PFACs) are formed to bring patients/caregivers together to provide feedback on a specific research project/study. Patient Advisors on these councils are typically compensated for their efforts and are often considered participants/stakeholders on the research project that they are providing feedback to. Each council varies depending on funding agency and project requirements.

All of Us Research Program PFAC

Begun in June of 2017, these advisors work closely with the NIH and Henry Ford researchers on approaches for engagement and return of information to patients as part of the development of a million person cohort for precision medicine research.

Accomplishments:

  • Assisted with submission of the grant proposal ($64M in funding over 5 years)
  • Participated in Feedback on All of Us Research Program marketing materials
  • Identification of barriers to enrollment in the program
  • Development of a Participant Ambassador Toolkit

Seniors using Technology to Engage in Pain Self-management (STEPS) PFAC

University of Michigan School of Public Health in collaboration with Henry Ford Health. Study purpose is to test if the STEPS intervention can help older adults with chronic pain live better.

Patient Advisor role on PFAC:

  • Providing feedback on program-related materials
  • Communicating about the study to potential participants and gatekeepers
  • Helping to identify recruitment channels and opportunities
  • Advising on challenges that come up during the study
  • Helping identify community resources for participants
  • Interpreting and disseminating study results
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