How to Be the Community in Community-Engaged Research - Reeve Foundation

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.

Register for the Reeve Summit 2022: Where Care, Cure and Community Connect, in-person October 13-14 in Washington, DC.

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 14^th 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.