PRIDEnet to Support Engagement of LGBTQ Community in NIH’s ‘All of Us’ Research Program

The San Francisco General Hospital Foundation (SFGHF) has been awarded $542,000 by the National Institutes of Health to engage sexual and gender minorities across the country in the All of Us Research Program, in part through outreach to PRIDEnet, a PCORnet Partner Network. Formerly known as the Precision Medicine Initiative Cohort Program, the All of Us Research Program is an ambitious effort to gather data over time from one million or more people living in the United States to ultimately accelerate research and improve health.

“This is a historic time for sexual and gender minorities in which these communities are beginning to be accounted for and empowered as stakeholders in the clinical research process from the very outset,” said Mitchell Lunn, MD, MAS, a principal investigator for the NIH award and of PRIDEnet. “In alignment with the patient-centered vision of PCORnet and the Patient-Centered Outcomes Research Institute (PCORI), the All of Us Research Program’s efforts will cultivate long-term, meaningful relationships, which will help us shed light on relevant health disparities within the entire nation, including these minority groups.”

As part of this effort, Lunn and his entire team, including University of California, San Francisco professor and co-principal investigator Kirsten Bibbins-Domingo, PhD, MD, MAS, will serve as All of Us Engagement Partners. In this capacity, they will engage the LGBTQ (Lesbian, Gay, Bisexual, Transgender, Queer and Questioning) community to ensure all study materials are appropriate for this specific group. The team will also provide input on enrollment materials and research plans, develop customized educational and recruitment/retention programs, and study best practices in the dissemination of research results to support retention.

The All of Us Research Program intends to open for national enrollment in late 2017 or early 2018. SFGHF’s award will last three years, while the entire program will continue indefinitely.

 

*Precision Medicine Initiative, PMI, All of Us, the All of Us logo, and The Future of Health Begins with You are service marks of the U.S. Department of Health and Human Services.

 

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.