The American BRCA Outcomes and Utilization of Testing Patient Powered Research Network (ABOUT PPRN) is the result of a 10-year collaboration between the leading national nonprofit advocacy organization for individuals and families impacted by hereditary breast and ovarian cancer (HBOC)—Facing Our Risk of Cancer Empowered, Inc.—and a team of researchers at the University of South Florida. These partners—led by patient advocates—have combined their strengths in advocacy, research, and engaging community participation to pursue better information, services, and outcomes for the patient community to which they belong, and to conduct collaborative research that involves patients at every level.
In Phase I of PCORnet, we developed the infrastructure, policies, and processes for ABOUT PPRN, involving consumers in every aspect. We educated stakeholders on PCORnet, comparative effectiveness and patient-centered outcomes research, and ABOUT, and helped prepare and motivate them to become engaged in research. The ABOUT network is centered on patients. Most of the ABOUT Network team have been personally impacted by HBOC.
In Phase I, we have been preparing the network to conduct research. ABOUT created a patient-majority leadership, which developed the research, data sharing, and collaboration policies of the network; established a way for all stakeholders to become involved in leadership roles; and opened our public portal and facilitated enrollment—currently 5,390. From the outset, ABOUT governance focused on enhancing diversity, including minority and traditionally underrepresented populations. We created innovative generator and percolator tools, giving stakeholders a path to help identify and prioritize the most important unanswered research questions and providing processes for reporting results back to all stakeholders. We performed important proof-of-concept work that will benefit all of PCORnet, including developing a way to identify HBOC patients from electronic health records, and a way to identify patients who are enrolled in more than one network and link all of their data.
In Phase II, we will enhance the partnerships we established in Phase I and the methods to enroll new participants while retaining and engaging those already enrolled. Phase II funding will allow us to utilize this extensive infrastructure to conduct the research that will improve health outcomes for our constituents. This will be accomplished by
- Enhancing the ABOUT enrollment process and developing a mobile app
- Expanding partnerships with advocacy organizations across the country
- Partnering with the Michigan Department of Community Health Genomics Program
- Partnering with industry to develop funded studies and increase enrollment in clinical trials
- Partnering with payers, clinical data networks, and clinical centers to expand data collection in multiple ways and integrate all the data
- Working with other PCORnet networks and sentinel partners to implement new approaches to use and integrate patient data to study outcomes that are important to patients.
The ABOUT Network is committed to growing our capabilities; sharing our experience, best practices, and resources; and fully participating in the national patient-centered network for comparative effectiveness research.
View more about this project on PCORnet.org.