What if people with real life experience of spinal cord injury advised at every stage and type of spinal cord injury research? How would their perspective impact research, care, and policy making? Where would we be today if it had always been like this? What does it take to get there?
A new course, to be unveiled at Reeve Summit 2022 (October 13-14 in Washington, DC), aims to build a cadre of community advocates, armed with the information, resources and skills they need need to confidently collaborate with scientists to ensure their research is focused on the needs of the paralysis community.
Register for 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 health research, there is a growing call for community-engaged research that integrates the voices of people with lived experience into research. It is part of a broader reckoning between science and historically underrepresented communities to try to reverse decades of distrust and disenfranchisement that continue to fuel health inequalities and injustice today.
Shifting power to community voices
The National Academy of Sciences, Medicine and Engineering recently published a report on improving representation in clinical trials. The expert authors concluded that “the clinical research field needs to undergo a paradigm shift that shifts the balance of power away from institutions and puts community priorities, interests and voices front and center.” learned engagement practices is taking concrete steps toward that goal.
Barry Munro, a paraplegic who sustained a spinal cord injury in 1987 and has been an active advocate of SCI research ever since, will moderate the workshop. A practicing attorney, Munro is currently Treasurer of the North American Spinal Cord Injury Consortium (NASCIC) and Chief Development Officer of the Canadian/American Spinal Research Organization.
“For conditions like Parkinson’s disease and breast cancer, people living with the condition have formed partnerships with research/clinical organizations, industry, funders and regulators. These partnerships have had a significant impact on research, care and policy,” he says. “Major SCI funders have come to appreciate the role of the community in research and are demanding such engagement as part of their grant applications. However, people with lived experience may be reluctant to act as advisors because they feel they lack the knowledge needed to participate.”
How to become a research advocate
NASCIC created the SCI Research Advocacy Course to address these obstacles head-on. The course has the dual purpose of expanding knowledge of the research process so that people with SCI and caregivers feel prepared to act as advocates for research and to help clinical and laboratory researchers of SCI work more effectively with the SCI community.
Munro’s session reviews the following items, including:
- the value that a knowledgeable consumer advisor can bring to the research firm;
- how the knowledge gained from the course can help solve common clinical research problems such as:
- how to work with researchers and clinicians to communicate what it is like to live with SCI and how to put the needs of the community first, and
- Best practices for engaging the community in research to improve results.
Engage your community at Reeve Summit 2022
The Reeve Summit 2022 takes place in person for the first time in three years 13-14 October at CONVENE at 600 14th Street, NW, Washington, DC. The Summit will address issues and issues relevant to the paralysis community and provide everyone with an opportunity to hear from experts, ask questions and share experiences on many aspects of life. Topics include access to healthcare, equity in healthcare, nursing, research, emergency preparedness and more in three general sessions and up to 18 focused breakout sessions.
Register now for the Reeve Summit 2022.