The Department of Health and Human Services has long been one of the government’s foremost innovators in the use of data. This May, Susannah Fox joined the department as its chief technology officer to help further this mission. A self-described “data nerd,” Fox spent 14 years at the Pew Research Center, where she led the health and technology portfolio before joining the Robert Wood Johnson Foundation as its Entrepreneur-in-Residence.
Fox spoke with FedTech Managing Editor David Stegon about her vision for healthcare data and how the department can continue to be an innovative leader in government.
FEDTECH: You’ve spent a large part of your career focused on how health and technology work together. How have those relationships changed, and where do you see them going?
When I started studying the social impact of the Internet on health and healthcare in 2000, only half of American adults had Internet access or a cellphone, and the American Medical Association put out a press release urging people not to go online to get health information.
Now, 15 years later, the Internet is woven into our lives. About 85 percent of American adults have Internet access, and about 9 in 10 have a cellphone, the majority of which are smartphones.
Throughout my work, I found that Dr. Google is the most sought-after second opinion in the country. Consumers use every tool at their disposal to take better care of themselves and their families. We are also connected to each other in a way that we haven’t seen before in human history, allowing people with rare diseases, for example, to find each other online and provide not only emotional support, but also practical coping tips and news about clinical trials.
Their experiences map what all of us will some day face: a life-changing diagnosis and the need for personalized care, such as what we are seeing in the precision medicine initiative.
HHS stands to benefit from this consumer engagement as people learn more about themselves through broad health data sets or by gaining access to their own health data. Combined with information that is available through the National Library of Medicine and PubMed, there’s a wealth of information HHS can inject to make science the core of the American healthcare experience.
FEDTECH: How can social media help patients?
We have so much to learn from our fellow citizens. During my fieldwork, I found many stories of people living with disabilities and chronic conditions who crowdsourced their way to a diagnosis. They worked with clinicians, but supplemented that relationship with an online community of people who share their diagnosis.
People are using data to help identify treatments. The Food and Drug Administration, working alongside the company PatientsLikeMe, looks to a patient’s own experience with their life-changing diagnosis and with drugs in order to really understand the experience of patients and caregivers.
I also learned that people used crowdsourcing and hacked health data to create new assistive devices. They created hardware to help themselves and then used social media to share their inventions. I want to shine a spotlight on the maker movement and the effect it is already having on healthcare.
FEDTECH: How do you see HHS continuing to innovate with data?
I’m lucky to be joining a moving train, as HHS has played an amazing role in improving accessibility to all the volumes of data that the department collects, shining a spotlight on the transformation that data can bring to healthcare.
One example of the work we have done is with the Blue Button Initiative, a way for veterans, Medicare beneficiaries and an increasingly broader sector of the public to download their own data. It is delivered as a simple text file that contains all their claims data, which includes, for example, a complete medications list and the date of their last flu shot. Once someone has that data file, they can bring it with them when they travel or give it to a new health provider as a starting point for their conversation.
FEDTECH: You now lead the HHS Entrepreneurs-in-Residence program. How has that helped the department with its mission?
The Entrepreneurs-in-Residence role comes from the venture capital world. It is a way to bring people with ideas outside the organization into a place where they can provide advice and insight.
I played that role with the Robert Wood Johnson Foundation, and HHS established its program in 2012 to recruit external talent with specific skill sets that are sometimes difficult to find in government. They typically come in for a short time — usually one to two years — and innovate around a certain idea or problem to be solved.
Since 2012, 13 project teams have participated in the EIR program, including 61 HHS career staff and 15 EIRs. The agencies that hosted about half those EIRs asked them to stay on after their fellowship, a key metric of their success.
This program provides a way for government to open a window to bring in insights and skills that we need to continue to innovate.