Research Participant Advisory Groups

Recognizing the importance of the research participant input to the process of research, the CCTST is supporting efforts to ensure research participants have a way to provide guidance on how to improve the research participant experience across the Academic Health Center.

The RPAC… “gave us a diverse sample of age, race, sex and experience with the medical field. We were able to get a lot of different views and opinions in a short time since the group was already established and more than willing to help out with research.”
– Matthew Veerkamp, Clinical Research Coordinator, Center for Autoimmune Genomics and Etiology.

Read the Genomics Case Study to see an example of the ways that the RPAC can help research studies.

Looking for Research Participant…

  • Input for your study design?
  • Feedback on materials for your study?
  • Guidance on how to approach and communicate the details about your study?
  • Ideas about how to engage the community?

Two Advisory Groups provide a structured way to capture the research participant perspective and input for questions like these. Anyone at the Academic Health Center can utilize these advisory groups to connect with research participants:

Research Participant Advisory Council (RPAC) at CCHMC

Group Photo of Members of the Research Participant Advisory Council (RPAC) at CCHMC

The 30-member RPAC consists of research participants (children and adults) and parents/guardians of participants and range in age from 13 to 58 years.

The objectives of the RPAC are to:

  • Partner research participants and families with members of the research community to provide guidance on how to improve research across the academic health center, with a focus on participant experiences and building relationships of trust.
  • Establish best practices and improvement initiatives to implement these changes.
  • Provide a formal referral system for other patient and family advisory councils across the institution looking to engage in research.
  • Humanize the face of research at the institution and in the surrounding communities.
  • Provide an infrastructure for investigators wishing to include patients and families in their research and study design.

West End Community Research Advisory Board

Group Photo of Members of the West End Community Research Advisory Board

The 20-member West End Community Research Advisory Board addresses community research occurring in their neighborhood.

The Board’s objectives are to:

  • Engage researchers to ensure they support the West End’s health goals in addition to collecting their study data
  • Provide input on how to make research easier and more understandable for the West End community
  • Guide what research happens in the West End.

Engaging with a Research Participant Advisory Group

“The fact that you have a group of people who are willing to come in every week and help us get our jobs done and that want to improve the medical field is a great advantage and opportunity.”
– Matt Veerkamp

Who can utilize these Advisory Groups? Anyone doing research-related work that would like feedback/input from research participants – regarding research at Children’s, as well as in the community.

When do these Advisory Groups meet? Both advisory groups meet monthly in the evening throughout the year.

How would I schedule a meeting with one of these Advisory Groups? Staff who are interested in utilizing either the RPAC or West End Community Research Advisory Board for their research studies or other projects can email Julie Wijesooriya or call 513-517-1076.

Learn more about the development of these Advisory Groups.

The CCTST sponsors the RPAC and West End Research Community Advisory Board and provides monetary operations support.