By LAURA LANDRO
Sept. 25, 2016 10:03 p.m. ET
As the chief technology officer of the U.S. Department of Health and Human Services, Susannah Fox is carrying on a mission that has long been a passion: helping people navigate health care and related technology.
Before being tapped for the federal post last year, she briefly served as entrepreneur in residence at the health-care-focused Robert Wood Johnson Foundation, but had her longest tenure at the Pew Research Center as associate director of the Internet Project from 2000-2014. There, Ms. Fox, who has a degree in anthropology, pioneered research methods to explore how information technology and social media affect the health-care industry and the consumer health-care experience, with a special focus on finding innovative ways to deliver care to people living with chronic illness.
Recently, she answered questions from The Wall Street Journal about her work and the future of innovation in health care.
Internet pluses and minuses
WSJ: What were the most significant findings in your research into the role of the internet in empowering patients? Are there any downsides?
MS. FOX: The internet flips the traditional information hierarchy, empowering the bottom of the pyramid: patients. If armed with information, they ask better questions about possible diagnoses, treatment options and daily life.
Studies I led at the Pew Research Center found that clinicians remain the top information source, online or offline, but about one in four U.S. adults say they have turned to others who have the same health condition. The deceptively simple reason: The internet gives us access not only to information, but also to each other. That is crucial to unlocking the potential of health and technology, from clinical-trial design to hospital-discharge planning.
There are downsides. A recent study showed that people age 65 and older are significantly less likely than the general population to go online for health information. People living with disability are also disproportionately offline in an online world. What wisdom are we missing because these stakeholders are not part of the online conversation?
Discussions about vaccines are daily proof that online information, including peer conversations, may not be based on science. It is essential to use the internet to seed the field with facts, to open access to medical journals and clinical-trial results, and to free the data.
On the frontier
WSJ: How has the role of chief technology officer at Health and Human Services evolved and what are your goals for your time in this post?
MS. FOX: HHS has an ambitious mission: to enhance and protect the health and well-being of all Americans. How might we deliver on that mission in a constantly evolving world? We can use technology as a Trojan horse for change. We say technology, but we mean innovation. We talk about interoperability, but we mean culture change in favor of openness.
My goal is to further widen the definition of technology beyond code and data. The frontier of health-care innovation recognizes the opportunity of advanced manufacturing and a return to craft, as well as the greater involvement of patients. With a 3-D printer, a creative person could make inexpensive prosthetic attachments to solve specific problems. For example, someone with a limb difference could create an attachment to hold playing cards or steer a bike.
WSJ: How are you working to make it easier to be innovative in a large federal agency?
MS. FOX: Creating space for innovation often means welcoming people way down deep in a hierarchy who may not have power but know what problems need to be solved. In health care, that describes patients and caregivers. At HHS, those are the front-line employees.
My team runs two internal innovation programs—the Ignite Accelerator and the Secretary’s Ventures Fund—that build up HHS employees’ entrepreneurial skills and give them support to take risks and experiment.
We also help HHS leaders shine a spotlight on a problem and invite people on the outside to help. We’ve been very successful in recruiting talented people to take a short-term tour of duty as an entrepreneur in residence or to participate in our prize competitions.
Data and design
WSJ: How can the use of technology and data best help people living with chronic diseases like diabetes?
MS. FOX: Diabetes involves daily choices related to diet, exercise, sleep and stress. One group I am watching is the #WeAreNotWaiting movement, people with diabetes who are using their device data to better manage their health. The more we can open up access to data at all levels, allowing it to flow where it needs to go, including directly to the patient, the better off we will be.
WSJ: What kind of innovation is out there to help the large population of aging Americans with their health needs?
What happened with the democratization of access to information and data is going to be mirrored in the democratization of design and manufacturing tools. And it can’t happen quickly enough.
Spirit and commitment
WSJ: What role can patients play in driving innovation in health care?
MS. FOX: People who are close to a problem are best suited to help solve it. Older, hierarchical models ignore these lead users or even block their access, forbidding modification of devices and services. Smart organizations welcome them in.
I spent more than a decade doing fieldwork in online patient communities, tracking the pattern of people being locked out of libraries, medical journals, research labs and even their own health records. They used the internet to beg, borrow and steal access to the tools they needed to save or improve their own lives. They showed all of us the point of technology: to learn from each other. We need that can-do American spirit in health care. We need to listen to the customer. To quote e-Patient Dave deBronkart: We should let patients help.
WSJ: Do you see any barriers to innovation?
MS. FOX: There are few sectors as resistant to change as government and health care. We count on their stability. But I have seen those two millstones grind a great idea down to powder. I’ve also seen initiatives flourish and grow, nurtured on the strong platform that this agency provides.
Innovators need sustained, courageous commitment from the top. We need a culture of experimentation that embraces risk and recognizes that failure is not only an option, but is likely within the safe setting of a lab like ours. And we need to ensure that anyone who sees a problem can research, prototype, and test a solution.
Ms. Landro is an assistant managing editor for The Wall Street Journal and writes the Informed Patient column. She can be reached at email@example.com.