Susannah Fox on the hunt to democratize access to patient data

The following is a guest blog post by Sally James.

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 last week 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.