Spotlight on a Patient-Powered Research Network

Author(s): PCORI Staff

In its September newsletter, the patient advocacy group Facing Our Risk of Cancer Empowered (FORCE) highlights its participation in ABOUT (American BRCA* Outcomes and Utilization of Testing). ABOUT is one of the Patient-Powered Research Networks (PPRNs) that are an important part of PCORnet, the National Patient-Centered Clinical Research Network, which PCORI is developing.

We’ve designed PCORnet to harness the power of partnerships and data to conduct critical health research faster, more efficiently, and less expensively than is possible now.  It includes two types of networks. PPRNs are communities or networks of patients motivated to participate in clinical research through PCORnet and to develop their capacity to engage in patient-centered research. Clinical Data Research Networks (CDRNs) originate in healthcare systems, such as hospitals, health plans, or practice-based networks, and securely collect health information during the routine course of patient care.

The ABOUT PPRN brings together people with hereditary breast and ovarian cancers and helps drive research that answers questions important to that community. The FORCE newsletter also links to video of FORCE Executive Director Sue Friedman discussing the need for research to answer questions that confront patients with these cancers. 

FORCE and a team of researchers at the University of South Florida have combined their strengths in advocacy, research, and community engagement to pursue better information, services, and outcomes for patients and conduct research that involves patients at every level. In ABOUT, they are expanding their registry and making plans to conduct research to improve health outcomes. The PPRN has strong partnerships with a diverse set of patient advocacy organizations, including the Black Women’s Health Imperative, Ovarian Cancer National Alliance, Sharsheret, and Young Survival Coalition.

Learn more about PCORnet here.

*The BRCA (breast cancer) gene test is a blood test that helps determine a person’s chance of developing breast and ovarian cancer.