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RPAC Case Study: Genomics and the RPAC

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

eMERGE graphic

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

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