Susannah Fox and open patient data

Susannah Fox was appointed the chief technical officer for the US Department of Health and Human Services in May. Many patient advocates believe she could – as she puts it – “enable patients to access their electronic health data easily and contribute it for research” and continue a movement toward giving patients a greater voice in federal policies.

She’s been called a superhero. She calls herself “a health data geek.”

In one recent example of her activities in her new role, she helped convene a White House panel earlier this year about connecting patients better to their own health records, and the event prompted a wide social media response at the hash tag #chealth4cancer. (Connected health for cancer.) You can read a transcript of the Twitter discussion here. The event was part of a White House Champions of Change project honoring individuals who have been pioneers in using and advocating for health data access.

Fox promises to continue what her predecessor Todd Park called the “data liberacion” movement. We asked some patient advocates active in this space for years to speculate on what they believe Fox might accomplish.

“She is a big brain plus giant heart plus real soul,” said Dave DeBronkart, who is the author of a book on patient advocacy and a frequent speaker at conferences. He has known and worked with Fox for seven years. “She is totally and purely committed to changing healthcare’s reality, and she has personal and social power.” He further wrote in an email that Fox doesn’t have to manage the technical initiatives herself (buzzword concepts like electronic medical records, Blue Button, meaningful use and fast health interoperability) but will be the soul and vision. “Time will tell how it pans out, but she has the brains, soul, and heart to be the lighthouse.”

Patient advocate AnneMarie Ciccarella said Fox challenges everybody to put patients at the center of projects.

“Data access? I’m confident she will make this happen and crack the whole research landscape wide open in its wake. Patients are being called the blockbuster drug of the century and Susannah Fox is central to that movement.”

Ciccarella is known on Twitter as @chemobrainfog and blogs about breast cancer, among other topics.

Fellow data geek Audun Utengen, who is co-founder of the analytical site symplur.com, says Fox is a superhero who will fight for underrepresented voices. He says:

“Her secret power is in knowing that to raise the patients up we need better understanding of healthcare, and understanding comes from data, and that data must be available. Susannah will be a force for good in HHS, for every dataset released there is an opportunity to create a better healing model for patients and their caregivers.”

Researcher and scientist Corrie Painter, PhD, has blogged about her own diagnosis of angiosarcoma and about patient advocacy. She sees Fox as uniquely suited to carry things forward. Painter studies immunology at the Broad Institute.

“Susannah Fox has been primed for years to take on this role and to bring with it the ‘institutional knowledge’ of the engaged internet-savvy patient. She understands the power that can be harnessed by including patients throughout all aspects of health care design and reform. As a patient, I feel a sense of relief. Finally, someone who gets it is at the helm.”

Fox has worked for a decade in areas of research that involve how patients use and access health information. She worked at the Robert Wood Johnson Foundation and before that at Pew Research. Her appointment did not draw much criticism, but some in the information-technology industry questioned her chops with computer science.

One of her goals, as she outlined in an interview with FedScoop is to leverage families and patients with rare diseases, whom she dubs the “alpha geeks” of health care. Because of their challenges, these folks hack the health system in ways she wants to imitate and study. Here is something she said in that interview:

“There are hundreds of people who are hacking health … creating these one-off solutions that could have an audience if there was a way to unlock and unleash the potential of introducing the maker community to the community that needs these inventions and hacks,” she said. “That’s where I’m pointing ahead and saying ‘What are the possibilities? What can health care learn from makers?”

Stay tuned. This kind of Fox news – Susannah Fox’s work in her new role – will be worth watching.

This blog first appeared at www.HealthNewsReview.org and is used with permission.

Lessons from #CancerFilm on “second screen”

For three nights this Spring, an unusual set of fireworks exploded across the social media landscape with implications for public discussions of health, particularly for health care professionals whose work includes crafting messages for patients.

An estimated 746 doctors joined in a twitter chat with the hashtag #cancerfilm in an extended conversation with more than 500 self-described patients, as well as about 12,000 other people who didn’t fit either of those labels (but fit 13 other categories.) This three-night, multiplayer dialogue began March 31 and created an “unprecedented” event according to one data junkie, Audun Utengen, of Symplur, LLC. Utengen runs the site www.symplur.com, which provides analytics on healthcare related hashtags.

The jury is still out on whether others will imitate this episode of what is called the “second screen” phenomena in health care.  Sports and music fans already tweet comments to each other while athletes and musicians are performing. “Did you see that goal?” But what happened on the three consecutive nights – beginning March 31, was a formal invitation by the US National Cancer Institute (and 18 partner research organizations) for the public to “comment” while watching a public television documentary entitled, “The Emperor of All Maladies,” about cancer.

“This opens up a whole new area for conversation in health care,” Utengen said in an interview. “This was an explosion of people talking about a disease.”

Emperor was a six-hour major television event on the US Public Broadcasting System, PBS, presented by documentary filmmaker Ken Burns, in partnership with WETA, based on the 2010 Pulitzer Prize-winning book by Siddhartha Mukherjee.

Cancer – in the documentary – was portrayed in lethal reality, complete with historic explanations of mistaken ideas and misguided treatments and days when wards full of children faced almost certain death.  Some of those on Twitter literally wrote “I’m turning it off now” because they said it was too difficult to watch. Utengen himself, whose family has been touched by pancreatic cancer, said it was not easy to see some images.

But the authenticity pleased some of the patients watching, who tweeted things like, “That’s exactly how I felt during chemotherapy” or “I remember losing my hair.”

For those who wish to study it, the entire transcript of #cancerfilm is available here.  You must scroll to the bottom to set parameters for the time section you wish to read. One social scientist who has been studying social media said parsing the importance from of an event like this is a statistical nightmare. Devin Gaffney is a doctoral student at Northeastern University in Boston, who has studied social media’s role in political uprisings, for example.

He said linking “online” conversation to offline behavior for #cancerfilm is tricky. “I think very likely there is a real link there – attention online will likely lead to some degree of attention (and donations, and attitudinal shifts, and improved science literacy), but I don’t think it happens in a way that we can directly quantifiably measure.” Surveys done months later might be able to pick up an impact, he explained.

During #cancerfilm some researchers posted inspiration and resolve, and even humility when facing new discoveries.  Big pharmaceutical companies, including Bristol-Myers Squibb and Celgene, were also tweeting. They were joined by research institutes, such as Memorial Sloan-Kettering and University of California at San Francisco, UCSF. Some of the tweeting provided information on therapies that were discussed inside the documentary itself.

The presence of research institutes tweeting about themselves drew this sharp rebuke from journalist and science communications expert Paul Raeburn.

Other critics of the conversation pointed to a lack of discussion of prevention, and what some called too much hype about new avenues of treatment, especially immunotherapy.

Peter Garrett is the director of communications for NCI, and he saw the six hours of the documentary as an opportunity for outreach.  The film was a rare platform for putting information about cancer into the stream of discussion exactly while questions emerged for the audience watching, he explained in a phone interview.

The NCI worked diligently to prepare and lead the event and have materials ready to post, Garrett said. Utengen counted 35 federal agencies tweeting during the event. *

A Platform for Online Patient Health Care Communities

Media relations expert Greg Matthews* believes the social media explosion of #cancerfilm will inspire others to attempt to re-create it.  “Anyone who saw the impact that #cancerfilm had on the online health ecosystem is going to be building on that model – it was phenomenally successful,” he wrote in an email.

Matthews works for W20 Group, a marketing consulting company based in Austin, Texas, that publishes detailed reports on social media in health care. Their “Social Oncology Report,” based on 2014 data was published in May.

What made the explosion of conversation so big, Matthews said, was the fertile ground already plowed by the myriad health-care patient communities on twitter. These communities fueled the second-screen event, because they already had online fluency about cancer, he said.

If you aren’t familiar, these are communities often run by patients where people gather weekly to talk about diseases during a certain time slot.  Two very active chats are #lcsm and #bcsm. Lung Cancer Social Media (lcsm) includes both doctors and patients and is frequently co-moderated by Seattle patient Janet Freeman-Daily. The breast cancer social media chat was co-founded by a surgeon, Deanna Attai of Burbank, Calif. In network mapping done by researchers of social media, Freeman-Daily and Attai, appear “central” to discussions in their respective disease areas.

During the May conference of the American Society of Clinical Oncology** in Chicago, doctors presented research about how some of these hashtags may operate in influencing patient decision-making, but the research is not published yet.

What Matthews finds interesting is how “chat” communities are changing and becoming more diverse, including patients, providers, advocates, researchers and health policy wonks. His company tracks what he calls more than 500,000 “online identities” related to health care internationally.  For his clients, which can include physicians, hospitals, pharmaceutical companies and others, he gathers analytics on how their target audiences behave online, and where the clients may reach a given audience with a message.

“I get the point of critics,” he explained, who see health-care social media as just one more place for marketing of products, devices and branding institutions.  “I understand the skepticism. But we know that emotion is a big part of health, and hope is one of the most powerful emotions.”

Hope is a frequent theme of disease-related discussions. Freeman-Daily, for example, is one of the most prominent patient influencers on social media about lung cancer. Her message is: even if you are diagnosed with advanced cancer and given very few treatment options, there may be a clinical trial you could enter.

In her own case, she is currently not showing any evidence of disease, after finding a trial specifically aimed at her cancer’s genomic signature and receiving chemotherapy though a Colorado laboratory.

She is also fighting stigma (as she explains in video link) that she blames on people mistakenly believing this cancer is only suffered by those who are smokers. An estimated 10-15 percent of lung cancer is diagnosed in “never smokers.”

One of Freeman-Daily’s comments during #cancerfilm reflected some of what Matthews observed. Hope is precious.

 

Nobody seems able to explain what the explosion of conversation could yield in terms of a permanent impact. But the fireworks leave a lingering smoke behind. Someone may learn how to read the signal in that noise.

This blog first appeared at Public Library of Science, PLOS. Reprinted here with permission.

Decoding movie about decoding DNA

The movie about BRCA1, a mutation in a gene, is about the emotion of dread.

Annie Parker, the main character,  sees a recurring symbolic doorway, over and over, that is a visual Greek chorus reminding her of her mother’s death from cancer. Parker stands in for all of us. While the monster she fears early on is breast cancer, one can easily see the movie from a more universal view. We all dread. We all feel destined.

I saw the movie June 6th, at a special premiere showing in Seattle, the city where Mary-Claire King does her daily work uncovering more and more about genomics and how our destinies sometimes get written in our DNA. The movie is fiction, but King is portrayed in it as a determined scientist. As many already know, King spent about 16 years building the case that there was a heritable cause for breast cancer. She’s spent dozens more refining that understanding. The acronym BRCA1 is the label for the mutation that she first identified as increasing risk of both breast and ovarian cancer. Annie Parker lived most of her life not knowing about this mutation – and feeling frustrated by not knowing.

Most people leaving the theater probably tell friends the movie was about breast cancer. But I think the movie was about dread itself and about scientific curiosity.  It was about the black taste of ash in your mouth at the bedside of a friend who is dying. The movie was about nausea.  But it was also about one of the antidotes to dread – understanding.

We get to know Parker through her everyday life, making lunch for her son and married to a man who doesn’t share her curiosity about the disease that took her mother and her sister. But in part, the psychological thrill of the film comes from seeing Parker set one small idea on top of another, as if using blocks, to try to find a way to explain her disease. This tentative and frail understanding slowly helps her to face the episodes of illness.

“Annie Parker is, I think, iconic of many women that I’ve met in the course of doing this work — women who were stunned by what happened, devastated by what happened, and responded not by giving up but by learning, by becoming involved, by figuring out what had happened,” King told a reporter in a story from The Seattle Times newspaper.

Over and over, Parker fights back against dread by trying to understand. Without any medical education, she still demonstrates the scientific principles of exploration and hypothesis. She creates a strange study club with a nurse and a sympathetic doctor. The trio hold meetings where they communally try to decipher published work on breast cancer and become lifelong friends in the bargain. Parker mythologizes King when she finds out about King’s work – and writes dozens of letters asking to join the research.

The movie’s director, Steven Bernstein, managed to mine some of cancer’s vilest images for humor. Parker pukes in her son’s backpack, because he won’t open the bathroom door fast enough for her to reach the toilet. “I’ll buy you a new backpack,” she says bravely, in a lilting voice that many mother’s use to try to disguise bad news from children. He stands dumbstruck by the sight of his mom with puke drooling from her mouth. The actress Samantha Morton does a great job portraying Parker.

What emerges from this complex character study of a woman is that for her – the notion that cancer might be inherited is a liberating idea. She wants to understand the how of her own family’s suffering, and knowing the science breaks a cycle of dread.

We grow to love the fictional Parker because of her faults and foibles. We love her quirky humor and her intense loyalty to certain people – even if they don’t prove all that stable. We love the way she gets hold of an idea and won’t let go. Even if her near-obsession costs her dearly. Many times in the movie, we see the healing power of understanding. People wrestle with questions and seem to heal from answers.

As the packed audience in Seattle clapped, we knew that the real-life Anne Parker of Toronto would stand before us.

She flew in to meet Mary-Claire King,  and they embraced for a long moment.  Flashbulbs threw light on it, video cameras whirred,  and the audience wondered suddenly whether we were seeing the character from our movie step out of the frame and get emotional closure.

Three people stood on stage after the show – director Steven Bernstein, scientist Mary-Claire King and stubborn patient Anne Parker. In different ways, they all faced dread. They all faced impossible odds.  One wonders if these three share a mutation somewhere, a reason they won’t quit.

Resources:

For more information aimed at helping patients understand genetic risks in breast and ovarian cancer, the patient group FORCE provides much discussion. There is a Seattle chapter of FORCE and members attended the screening and met after the movie. At that meeting, several women shared that they know they carry the BRCA1 or BRCA2 mutation, and are glad to have a place to talk to other people facing such information.

Bioethicists regularly struggle with how information about risk influences a person’s quality of life. For more discussion of “dread” in that context, and other bioethics issues, see this compendium from Nature.

In the photo above, Anne Parker is at left, Mary-Claire King is center and Steven Bernstein is at right.