In a summer movie blockbuster season filled with dragons, apes and Transformers, it should not be surprising that a film about a patient and a scientist unraveling the mysteries of hereditary breast cancer is not getting a run at your local multiplex.
But whatever Decoding Annie Parker lacks in box office potential, it could well make up as a conversation starter.
Parker's true story — she is now a three-time cancer survivor — is undeniably compelling, as is the story of how the "breast cancer gene'' was identified.
And the film raises issues that resonate even beyond Parker and hereditary cancer research.
What do you do when your health questions aren't being answered to your satisfaction? Who decides which medical research issues get priority? How do you find solid evidence to help you make medical decisions for yourself and your loved ones?
Decoding Annie Parker, starring Samantha Morton, tells of Parker's search for answers after doctors insist her breast cancer is just bad luck — though the disease killed both her mother and sister. With only a high school education, and while coping with cancer, a child and a far-less-than-ideal husband (played by Aaron Paul of Breaking Bad fame) Parker sets out on her quest.
In a parallel story line, Helen Hunt portrays Dr. Mary-Claire King, the scientist who bucked conventional medical wisdom to pursue her hunch that there is indeed a genetic basis for some breast and ovarian cancers. We meet King in her lab at the University of California at Berkeley, staring down a university official mortified at the likely cost and seeming futility of what she is proposing — to sift through the genetic coding of thousands of women to find out why breast cancer appears to run in some families. Despite skimpy funding, King and her team spend much of the 1980s sifting through haystacks before finding the needle that now is known as the BRCA-1 gene mutation.
I recently saw Decoding Annie Parker at a special screening, followed by a group discussion with an expert panel — Dr. Rebecca Sutphen, president and chief medical officer of InformedDNA and a University of South Florida professor; Dr. Sue Friedman, executive director of FORCE (Facing Our Risk of Cancer Empowered); and Jana Pruski-Clark, who leads the cancer genetic counseling team at InformedDNA.
Though not being shown in Tampa Bay area theaters, the movie is available on demand through cable providers. Perhaps Annie Parker's story will help expand the conversation about patients effectively participating in their own health care decisions.
"For so many people, even if you talk about shared decisionmaking, they feel intimidated and awkward,'' Sutphen told me this week when I called her to talk more about the movie. "There are real good reasons they feel that way, but also real good reasons they shouldn't.''
Sutphen is principal investigator in a project announced just last month, in which researchers from USF Health, FORCE and other agencies are inviting Americans with a personal or family history of hereditary breast or ovarian cancer to participate. The goal: a "patient-powered research network'' that pulls together medical histories and experiences to improve care and outcomes.
For instance, a researcher might be most focused on obliterating a particular type of cancer. But a patient at high risk of hereditary breast or ovarian cancer might also want better data on fertility and quality of life before making her own care decisions.
"In the past, it's been all about the scientists making the decisions,'' Sutphen said. "Where is the patient in that?''
You can find out more about the ABOUT (American BRCA Outcomes and Utilization of Testing) network at FORCE's website, facingourrisk.org.
Amid the political uproar surrounding the Affordable Care Act and what it has meant for insurance access, you may not have heard about what it does to invite consumers into the research process. The federal health law created the Patient Centered Outcomes Research Institute, and the ABOUT project is one of 29 research networks in that effort. You can find out more about its work at pcori.org.
Annie Parker had to overcome incredible hurdles to learn about her medical legacy. Nearly three decades after her first diagnosis, patient participation is not only tolerated, it's starting to be invited.
Patient-centered research "really is the next layer, not just on an individual level of patients being empowered, but as a community having your voice heard and having research directed in a way that meets your needs,'' Sutphen said.
But none of that can happen unless we all learn to speak up.