This past February the Research Participant Advisory Council (RPAC) celebrated its first anniversary, marking a year of providing guidance on how to improve the research participant experience across the Academic Health Center (AHC). Established by a group led by Becca Harper DNP, RN, Clinical Translational Research Center (CTRC) director of operations, the RPAC has provided invaluable feedback to Cincinnati Children’s Hospital Medical Center (CCHMC) over the past year on research participant issues such as consent/assent, Clincards and genetic reports for families. As a result of their work, a more participant-friendly assent form has been created; changes have been made to the hospital provided Clincard information sheet and process, and a participant-minded genetic pamphlet and video has been crafted.
The 30-member RPAC consists of research participants (children and adults) and parents/guardians of participants and range in age from 12 to 58 years. Its objectives are to:
- Partner research participants and families with members of the research community to provide guidance on how to improve research across the AHC, 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.
In January, Julie Wijesooriya, MPA, CTRC Research Community Liaison, came on board to CHHMC and is now facilitating the RPAC. In addition to working with the current RPAC at CCHMC, she has been working in partnership with Melinda Butsch-Kovacic, PhD, associate professor, division of asthma research and Alexis Kidd, director of Seven Hills Neighborhood Houses, to create a community-based advisory board in the West End at Seven Hills. This 20-member West End Community Research Advisory Board will meet for the first time in June to address community research occurring in their neighborhood, with the following objectives:
- Engaging researchers to ensure they support the West End’s health goals in addition to collecting their study data
- Providing input on how to make research easier and more understandable for the West End community
- Guiding what research happens in the West End.
As part of their first meetings, they will have a 2-part training on participant research ethics, to better understand what protections are in place for research participants.
Need Research Participant input or a focus group for your study or project? Want ideas about how to engage the community? The RPAC and West End Research Community Advisory Board meetings are a great way to get feedback.
Who can utilize these Advisory Groups? Anyone doing research-related work that would like feedback/input from research participants – regarding research at CCHMC, 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 contact Julie Wijesooriya.
Also, if you are interested in helping with this work by serving as a staff representative or expert, please contact us. We would love to have your expertise!
The CCTST sponsors the RPAC and West End Research Community Advisory Board and provides monetary operations support.