VIDEO: Roundtables invite young adults with IBD to ‘have equal voices’ on research, care
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In a Healio video exclusive, Sneha Dave, recaps a roundtable series presented by the Crohn’s and Colitis Young Adults Network, which encourages young adults with inflammatory bowel disease to discuss gaps and opportunities in research.
“In 2023, we held a series of roundtable sessions designed to highlight the leadership and need for young adult patients to be involved in research, but also address some of the often under-discussed topics we feel exist as young adult patients within the research field,” Dave, founder and executive director of the nonprofit organization Generation Patient and founder of the Crohn’s and Colitis Young Adults Network (CCYAN), told Healio.
In the roundtable sessions, which reflect a “truly authentic codesign,” young adult patients partner with health care professionals to speak about a topic of interest, which is followed by an open discussion among participants about opportunities for future research. Key themes include screening for disordered eating in IBD, sexual and reproductive health, and trauma-informed care.
To date, nine documented discussions have been published in Health Care Transitions, and CCYAN members are currently drafting a consensus statement summarizing each proceeding.
“This roundtable series really highlighted the importance of centering patients within research and including patients in understanding the gaps and opportunities that exist,” Dave said. “We hope that the broader medical and research field will recognize the importance of empowering patients to be involved in research and have equal voices within the process to identify gaps and opportunities.”
To learn more about the roundtable series and access public resources, visit www.ccyanetwork.org.
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