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.
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.
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