Medical research has historically excluded minority participants, creating a one-size-fits-all approach to treatment. UPMC primary care physician Dr. Mylynda Massart said the problem is pervasive, as her patients come from a variety of backgrounds.
"I want to use the best, evidence-based medicine in their health care," Massart said. "Unfortunately, historically, research has not been done on a very diverse patient population, and often when I go to that evidence, it doesn't apply to the patient in front of me."
The University of Pittsburgh and UPMC are partnering with the National Institutes of Health to help gather one million participants for a 20-year project that would collect health information for future studies. Pitt plans to begin local recruiting for the All of Us Research Program on Sunday. Western and central Pennsylvania could ultimately compose up to 12 percent of the nation's participants.
Steven Reis, director of Pitt's Clinical and Translational Science Institute, said this means the region's unique demography will be well represented.
"So therefore, all of the scientific discoveries that come from the study will be relevant to all of us," Reis said.
Reis said the NIH wants 51 percent of study participants to be from groups underrepresented in biomedical research, which includes minority ethnicities and races, as well as people from rural areas. He said the NIH was particularly interested in partnering with Pitt because of the large population of older people in the region. Other partner medical systems participating in recruitment are located in Detroit, New York City and Boston.
Protecting medical data is an important component of the research. According to Shyam Visweswaran, a professor of biomedical informatics at Pitt, all the data will be stored in a central location controlled by Vanderbilt University in Nashville, Tenn. That information will be available in three tiers: general findings aggregated for the public and released when appropriate; data useful for researchers, including medical conditions and responses, that would not have participant names attached; and the highest level, which would require special clearances and would likely only be available to researchers conducting follow-up studies.
Find more information on how to sign up for the program here.
