Getting more African-Americans and other minority groups to take part in clinical research into treatments for multiple sclerosis (MS), and identifying and tackling continuing disparities in efforts that affect patient care, will be the focus of a project led by the nonprofit group Accelerated Cure Project for Multiple Sclerosis (ACP) and supported by a $250,000 award from PCORI (Patient-Centered Outcomes Research Institute).
Under the Multiple Sclerosis Minority Research Engagement Partnership Network, as the project is called, a team from ACP will work with Feinstein Kean Healthcare, a strategy and communications firm, to identify barriers to participation in MS research by African-American, Hispanic and other underrepresented communities, and to develop and test solutions to overcome these barriers. The work will be partly funded by the Eugene Washington PCORI Engagement Award and led by Hollie Schmidt, ACP’s vice president of scientific operations.
“There is a tremendous need to involve minority communities in the design and development of research, and to engage researchers in increasing their representation in clinical studies,” Robert McBurney, ACP’s president and chief executive officer, said in a press release.
According to ACP, Caucasians are thought to have the highest prevalence of MS, but recent studies are finding that African-Americans appear to be at higher risk of MS and at risk for its more aggressive forms. Yet both blacks and Latinos in the U.S. are underrepresented in medical research and, often, in general healthcare.
For this reason, the Partnership Network will focus mainly on African- and Hispanic-American populations, to develop a strategy approach and toolkit for a series of outreach activities in the project’s first two years. ACP also intends to create a model for minority outreach of use in other disease areas.
The Partnership Network is part of iConquerMS, an Accelerated Cure Project research initiative led and informed by those living with MS. Through iConquerMS, patients have a vehicle to suggest research topics of importance to them, and to provide feedback on research studies. Through its online portal, iConquerMS also offers those with MS a safe and secure way to contribute their health information, providing researchers with the data they need to identify disease patterns and gain insights.
“This award will allow ACP to grow vital minority engagement in our own patient-powered MS research network, iConquerMS, and in numerous other MS research projects. We are pleased that PCORI has recognized the potential this program has to make important inroads in building minority participation, not only in MS research, but in all areas of medical research,” McBurney said.
“Community participation in identifying key issues and solutions is of paramount importance to meaningful and relevant research and to sustainable change,” said Monique LaRocque, MPH, Feinstein Kean’s vice president.
“We believe the results of this project may have potential to improve outreach among different underrepresented populations and other disease states, and we look forward to following its progress and working with ACP to share the results,” said Jean Slutsky, PCORI’s chief engagement and dissemination officer.