ABOUT Patient-Powered Research Network
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by Sue Friedman
FORCE is building a patient-powered research registry! Click here to learn more about participating.
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 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 realworld 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 health care providers help me make the best decisions about my health and healthcare?
The ABOUT Network was 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 Does Patient-Centered Outcomes Research Help the HBOC Community?
People with HBOC must make important health care 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
FORCE members may participate in the ABOUT Network in several ways. Our “generator” process starts at the community level where we will perform needs assessments, collect people’s real-world health experiences, and conduct polls and surveys to determine the most important health care questions for people facing HBOC. People can participate by joining FORCE’s mailing list or closed Facebook group and responding to our polls, surveys, and queries.
Those who wish to make a greater contribution to research can join our ABOUT research registry through an online portal at 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. Read our sidebar for more information.
As a research network governed by and for the HBOC community, ABOUT needs passionate and committed volunteers for our steering committee and task forces. No experience is needed, but people who are interested in a leadership role must complete training by webinar through our FORCE Research Advocate Training (FRAT) program and an application demonstrating their commitment to HBOC research. Contact Lisa Schlager at firstname.lastname@example.org for more information.
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®
- Young Survival Coalition
Disclaimer: Health links are made available for educational purposes only. This information should not be interpreted as medical advice. All health information should be discussed with your health care provider. Please read our full disclaimer for more information.
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