Cincinnati Children’s
Research Participant Advisory Council (CCMHC RPAC)

ABOUT

The 20-member Cincinnati Children’s Hospital Medical Center's Research Participant Advisory Council (CCMHC RPAC) addresses the research participant experiences at CCHMC.

The CCHMC RPAC consists of research participants (youth and adults) and family members of participants (age 11 and up) and meets on the fourth Thursday of the month from 5:30 to 7:00pm.

Members represent a diverse cross-section of participants, including condition, age, race, gender, LGBTQ+, socioeconomic status, research experience and religious affiliation.

Objectives of the CCHMC 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.

For more information, please contact Julie Wijesooriya, Research Community Liaison, CCHMC RPAC.

CCHMC RPAC

CCHMC RPAC SUCCESS STORY

In the fall of 2015 Cindy Prows, Clinical Research Nurse in Cincinnati Children's Division of Human Genetics and her staff approached the Research Participant Advisory Council (RPAC) seeking input on multiple aspects of a genetics study, including study design, genetic reports and a video.

Their Goal: To engage adolescents, young adults and parents in the development of tools to support the return of genomic research results. They were in the early stages of rolling out this research study and felt that the continued input from the RPAC would help inform their study immensely.

The RPAC Meetings

Over the course of 4 months the Genetics team held 3 meetings with the RPAC to gain the feedback they needed on their study.

November 24, 2015 The Genetics team presented their study and consented the RPAC members to participate as a focus group. The RPAC then reviewed the genetic report shared with research participants to provide feedback about receiving genetic testing results, including who should have access to those results, and about messages used to help explain the results.
December 17, 2015 The Genetics team conducted a second focus group with the RPAC focusing on when participants receive negative genetic results.
March 24, 2016 The RPAC participation in these focus groups informed the need for a genomics video. At this meeting, the RPAC reviewed and provided the feedback for the storyboards for the genomics video that would be used to supplement informed consent for the adolescent, parent study.

Outcomes from RPAC Meetings

As a result of the RPAC meetings, the Genetics team was able to make improvements to better communicate results. Specifically, with the RPAC’s input, the team was able to redesign the look of the genetic report that participants would receive.

Reviewing storyboards and providing feedback, the RPAC also helped with creating the design and content for a genetics video with the participant in mind.

RPAC Impact on Genetics

The RPAC’s input helped to ensure that the materials were understandable and participant-friendly to a diverse participant population.

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

Updated genetic report that was redesigned using input from the RPAC

ENGAGING WITH A RPAG

Who can utilize the Research Participant Advisory Group?

Anyone doing research-related work who would like feedback/input from research participants, family members or community members.

When do the standing monthly Advisory Groups meet?

The advisory groups meet monthly in the evening throughout the year.

How would I schedule a meeting with one of these standing monthly Advisory Groups?
Staff who are interested in utilizing the Children’s RPAC, UC RPAC or West End Community Research Advisory Board for their research studies or other projects can contact an RPAG team member.

How would I request an RPAG member for my project or research?

Staff who are interested in identifying a participant or community member for their project 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.

Watch our Get Connected to Research video series to learn more about research and what it means to participate in research.

Cincinnati Children’s Research Participant Advisory Council (CCMHC RPAC)