The Reeve Summit 2022: Where Care, Cure and Community Connect, hosted by the Christopher & Dana Reeve Foundation, will feature a session on Community Engaged Research
Learn How to Be the Community in Community-Engaged Research at the Reeve Summit 2022.
SHORT HILLS, N.J., Sept. 21, 2022 /PRNewswire/ -- Within the spinal cord community and across the spectrum of healthcare research, there's a growing call for community-engaged research that is shifting the power to community voices to share their experiences. Barry Munro, an attorney by trade and currently the treasurer for the North American Spinal Cord Injury Consortium (NASCIC) and chief development officer of the Canadian/American Spinal Research Organization, will present this new way of research at the Reeve Summit.
Christopher & Dana Reeve Foundation Blog
What if people with lived experience of spinal cord injury advised every stage and type of research about spinal cord injury? How would their perspective impact research, care, and policy-making? Where might we be today if that had always been the case? What will it take to get there?
A new course has been developed, and highlights will be presented at the Reeve Summit 2022 (October 13-14 in Washington, D.C.). Learn how to build a cadre of community advocates who are equipped with the information, resources, and skills they need to confidently engage with scientists to ensure that their research centers the needs of the paralysis community.
Within the spinal cord community and across the spectrum of healthcare research, there's a growing call for community-engaged research that integrates the voices of people with lived experience into research. It's part of a broader reckoning between science and historically under-represented communities to try to undo decades of distrust and disenfranchisement, which continue to fuel health disparities and inequities today.
Shifting the Power to Community Voices
The National Academy of Sciences, Medicine and Engineering recently issued a report on improving representation in clinical trials. Its expert authors concluded that "the clinical research field must embrace a paradigm shift that moves the balance of power from institutions and puts at the center the priorities, interests, and voices of the community." The new NASCIC course, developed with the engagement practices it teaches, takes concrete steps toward that goal.
Barry Munro, a quadriplegic who sustained a spinal cord injury in 1987 and has been an active advocate in SCI research ever since, will facilitate the workshop. An attorney by trade, Munro is currently treasurer for the North American Spinal Cord Injury Consortium (NASCIC) and chief development officer of the Canadian/American Spinal Research Organization.
"In medical conditions such as Parkinson's disease and breast cancer, people living with the condition have partnered with research/clinical entities, industry, funders, and regulatory agencies. These partnerships have had a meaningful impact on research, care, and policy," he says. "Major SCI funders have grown to appreciate the community's role in research and require such engagement as part of their grant applications. However, people with lived experience may be hesitant to serve as advisors because they feel they lack the knowledge needed to participate."
How to Be a Research Advocate
NASCIC created the SCI Research Advocacy Course to meet those barriers head on. The course has a dual mission of increasing knowledge of the research process so that individuals with SCI and caregivers feel prepared to serve as research advocates and helping SCI clinical and laboratory researchers more effectively partner with the SCI community.
Munro's session will review the following content, including:
- the value a knowledgeable consumer advisor can bring to the research enterprise;
- how knowledge gained from the course can help solve common clinical research problems such as accommodating community needs in trial design, recruitment, and retention;
- how to work with researchers and clinicians to instill what it's like to live with an SCI and center the community's needs, and
- best practices for engaging the community in research to improve outcomes.
Engage Your Community at Reeve Summit 2022
The Reeve Summit 2022 will be held in person for the first time in three years October 13-14 at CONVENE at 600 14th Street, NW, Washington, DC. The Summit will touch on topics and themes relevant to the paralysis community and give everyone a chance to hear from experts, ask questions, and share experiences on many aspects of life. Topics include access to healthcare, health equity, caregiving, research, emergency preparedness, and more over three general sessions and up to 18 focused breakout sessions.
Register now for the Reeve Summit 2022.
About the Reeve Foundation:
The Christopher & Dana Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research and improving the quality of life for individuals and families impacted by paralysis. By uniting the brightest minds in the field, we are working tirelessly to accelerate scientific discovery across the field of spinal cord research by investing in labs across the globe. Additionally, through a cooperative agreement with the Administration for Community Living, the Reeve Foundation's National Paralysis Resource Center (PRC) promotes the health, well-being, and independence of people living with paralysis, providing comprehensive information, resources, and referral services assisting over 100,000 individuals and families since its launch in 2002. The Reeve Foundation is committed to elevating our community's voices and needs to achieve greater representation and independence. We meet all 20 of the Better Business Bureau's standards for charity accountability and hold the BBB's Charity Seal. For more information, please visit our website at www.ChristopherReeve.org or call 800-225-0292.
Media Contact:
Rita Gentles
[email protected]
SOURCE Christopher & Dana Reeve Foundation
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