Patient-Powered Registry Uses Real-World Experiences to Help Guide Research

FORCE has collaborated with researchers at the University of South Florida and the Michigan Department of Community Health to form the ABOUT Patient-Powered Research Network (PPRN). Our intent is to improve informed decision making and health outcomes for people affected by hereditary breast, ovarian, and related cancers.

Unlike traditional research that involves patients only as research participants, ABOUT (American BRCA Outcomes & Utilization of Testing network) will conduct patient-centered outcomes research involving consumer participation in every aspect. We plan to enroll 10,000 people, build a network governance structure that includes patients and advocates, and compile and refine people’s real-world experiences to shape and prioritize the important research questions.

Research driven by patients and their real-world experience is not new, but the Patient-Centered Outcomes Research Institute (PCORI), the government-funded agency focusing on it, is new. The priority is conducting research to answer four common patient questions:

• Given my personal characteristics, conditions, and preferences, what should I expect will happen to me?
• What are my options, and related potential benefits and harms?
• What can I do to improve outcomes that are most important to me?
• How can my healthcare providers help me make the best decisions about my health and healthcare?

The ABOUT Network is one of 18 PPRNs funded by PCORI (and the only PPRN focused on hereditary cancer) to participate in PCORnet, PCORI’s national research network that will conduct large-scale patient-centered outcomes research.

How Patient-Centered Research Helps

People with hereditary breast and ovarian cancer (HBOC) must make important healthcare decisions in the face of research and knowledge gaps. Although strides have been made in HBOC research, FORCE is contacted daily by constituents who are interested in answers to questions such as:

• Will my health and quality of life be improved or harmed by taking hormone replacement?
• Are certain treatments better or more harmful for people with hereditary cancers?
• Which factors affect satisfaction with a particular type of breast reconstruction?

We will use a series of surveys, polls, and needs assessments—what we call Generator and Percolator (GAP) tools—to capture our community’s health inquiries, refine and process them into research questions, and answer them through our research registry.

How People Can Participate

Those who are interested in joining the ABOUT research registry and/or to learn more about participating can visit www.aboutnetwork.org. Participants will be asked to read and agree to a consent form, provide their preferences regarding the use of their secure data in future research, and answer a questionnaire about their health and outcomes. The information shared confidentially through the registry will be used to conduct patient-centered outcomes research. We will also offer people the opportunity to help us “Free the Data” by anonymously sharing their BRCA test results.

Partner Organizations

We are partnering with other organizations to achieve our enrollment goals, build an inclusive governance structure, and assure diversity and representativeness in all aspects of the ABOUT Network. Our partners will help us promote research opportunities to their membership, assess the information and resource needs of their constituents, and participate on the ABOUT Network Steering Committee. Our partners include: Black Women’s Health Imperative; Ovarian Cancer National Alliance; Sisters Network®, and the Young Survival Coalition.

FORCE is the only national nonprofit organization devoted to individuals and families affected by hereditary breast, ovarian, and related cancers. For more information, please visit www.facingourrisk.org.