Kudos to Angelina Jolie Pitt for sharing her BRCA status and news of her prophylactic surgeries
with the world, soon after her risk-reducing mastectomy two years ago and again last week when
she wrote about her bilateral salpingo-oophorectomy. Her two op-eds brought an unprecedented
level of awareness about hereditary cancer, making words like “mutation” and “mastectomy”
Ms. Jolie Pitt articulates the challenges of her medical situation. Like her, thousands in the
Hereditary Breast and Ovarian Cancer (HBOC) community must make similar medical decisions
every day to live the best and healthiest lives possible. Twenty years of progress on BRCA research has provided us with many answers. For 16 years, FORCE has focused education and research efforts on these topics to empower people to make informed decisions, but so many unknowns remain, and more research is needed to answer questions about long-term outcomes associated with specific medical choices.
A growing number of experts believe that “democratizing” research by involving patients more fully in the process can help us answer important research questions more quickly. FORCE agrees with this patient-centered research approach, and is working with research partners to build the ABOUT Network, a patient-powered research network and registry to conduct large patient-centered outcomes research to answer important medical questions about HBOC.
All aspects of patient-powered research—developing the research questions, planning the studies, determining use of patient data—are guided by members of the community united by a particular medical condition. By collecting and harnessing the experiences, personal choices, and outcomes of millions of people making decisions in the real world, we can answer questions about which choices provide the best outcomes for which people. Additionally, by organizing a large population of people willing to participate in studies, patient-powered networks can help enroll patients into clinical trials more quickly, speeding up drug and medical test development.
Ms. Jolie Pitt’s op-eds highlight the medical questions still faced by our community and the relevance of ABOUT:
- Decisions around hysterectomy
Jolie Pitt shared that she kept her uterus during her risk-reducing removal of her ovaries and tubes (RRSO). Many women grapple with this decision. National guidelines on RRSO do not include recommendations for or against hysterectomy, and more research is needed. From an ABOUT Network survey that studied how women make decisions about hysterectomy, we estimate that half of the women in our community undergoing RRSO keep their uterus and half remove it. Surgeon recommendation was the strongest factor in women’s decisions, despite the lack of guidelines and research to recommend one option over another. Moving forward, ABOUT hopes to study long-term outcomes associated with removing or retaining the uterus during RRSO to help women make informed decisions that are right for them.
- Hormone replacement
Angelina shares thoughts about a dilemma that is familiar to our community: factors that shaped her decision to take hormones. Some research on the safety of short-term hormone replacement therapy for previvors who undergo RRSO has been conducted, but little research has focused on who benefits most from hormones, the best hormone preparations and how long they can be safely taken, and options for managing menopause without hormones. ABOUT deployed an engagement survey to understand how women make medical decisions about hormones; we’ll soon share the results. We are also hoping to conduct studies to compare long-term outcomes in women based on their choices around managing surgical menopause.
- Tubes-only surgery
Jolie Pitt also mentions fertility and alludes to removal of the fallopian tubes only (known as salpingectomy) as an option for women who are not ready to remove their ovaries. FORCE has long advocated for developing large research studies to look at whether this surgery could be a safe option for these women. A FORCE publication addresses our community’s willingness to participate in this type of research, we have a webinar on the topic, and we present updates at our annual conference. As a member of the National Cancer Institute’s NRG Cooperative Group, FORCE has strongly advocated in support of a large, national clinical trial for high-risk women to determine if salpingectomy is safe and effective; a study is being developed and should open soon. Once it opens, ABOUT will facilitate enrollment by notifying eligible women in our registry about how and where they can enroll.
Jolie Pitt previously shared her decision to have nipple-sparing mastectomy and breast reconstruction with implants. FORCE provides a wealth of information on this topic: annually, thousands of women view our Post-mastectomy Photo Gallery, and hundreds attend sessions on mastectomy, reconstruction and Show & Tell at our conference to see realistic post-mastectomy outcomes to assist in their decision-making. Still, very little is known about long-term outcomes associated with different types of risk-reducing mastectomy and reconstruction. ABOUT is developing an engagement survey on decisions around mastectomy and reconstruction to help us design patient-centered outcomes research studies on this topic.
FORCE’s ABOUT network is one of 18 condition-focused patient-powered research networks participating in building the National Patient-Centered Clinical Research Network (PCORnet). PCORnet is a national platform for conducting large-scale, patient-centered outcomes research, which will collect and connect personal healthcare data and outcomes from 70 million Americans. Imagine a giant research network using a patient-centered approach and connecting different disease groups, hospital systems, researchers, industry, government agencies and patients together to learn about long-term health outcomes across numerous medical situations. That is the vision of PCORnet.
Like Angelina, each of us can use our personal health care decisions to become agents for change. How can you get involved?
- Enroll in the ABOUT Network registry to share your medical decisions (it takes about 20 minutes).
- Ask your relatives to join ABOUT too.
- Be an ambassador for patient centered outcomes research and help us spread the word about PCORnet and the ABOUT registry.
- Apply to participate in the FORCE Research Advocate Training (FRAT) program and to serve on the ABOUT Network’s governing bodies.