Susannah Fox, the associate director of the Pew Research Center's Internet & American Life Project, reflects on the 2014 Health Datapalooza, peer-to-peer networks, and social health data.
There are few sectors where technology is driving changes in society that hold as much promise as healthcare. As I wrote in my last column, my trip to the 2014 Health Datapalooza, an annual gathering in Washington, D.C., reminded me of how much is happening in the intersection of medicine, data analysis, and mobile devices, spurred on by innovation in the public and the private sector.
New Medicare data releases are enabling unprecedented accountability and transparency into the healthcare system. Personal data access opens new doors for patients. Open recall and adverse events data protects consumers.
At this year's Health Datapalooza Rachel Kalmar, a data scientist at Misfit, showed me many of the wearable options already on the market. She reminded me that, just as the best camera is the one you have in your pocket, the best health data collection device may often be the one on your wrist or your belt.
— Alex Howard (@digiphile) June 2, 2014
As anyone following consumer and health technology knows, there's been significant growth in wearable computing recently, with more mainstreaming of "self-tracking" and personal health data creation to come this fall with a health-focused device from Apple.
Interviewing Susannah Fox at the 2014 Health Datapalooza
Susannah Fox, the associate director of the Pew Research Center's Internet & American Life Project, was the master of ceremonies at the second day of this year's datapalooza.
I spoke with her in May 2011 about the ways the internet was shaping healthcare, the "quantified self," peer-to-peer healthcare between e-patients, and access to broadband internet service and information, applications, and services on mobile devices. When we sat down for a series of video interviews at the end of the 2014 Health Datapalooza, we revisited these themes.
"The most exciting innovation is not just access to information but access to each other," she said. About 8 in 10 of the people Pew surveyed go online for information about healthcare, which now includes experiences shared by others who share their condition.
Social health data
Fox and I talked about whether data from these devices should be part of clinical decisions, used to make insurance decisions, or otherwise be shared anywhere else than upon private networks that users control.
Providing lifelines to the sick
Fox and I also discussed how the event has changed, including what she hoped to see this year and in the future.
"The very first Health Datapalooza, you and I both wrote about how if health data is going to be like weather data, is that really going to help people?" she asked. "You can't do anything about the weather. Can you do anything about the social determinants of health? That's so much of what data transparency exposes."
What Fox was looking for in this year's Health Datapalooza was more action.
"Transparency to me is the ship is sinking," she said. "How fast is it sinking? What I wanted to hear this year is who's building a lifeboat, or even just throwing out a lifeline, just helping out a single segment of the market. What I'm really excited about is that there were a lot of people who are building lifeboats and throwing lifelines to real patients, who are starting to say we're not going to wait for them to boil the ocean, we're not going to wait for interoperability, we're going to figure out how to help people connect with drug information, or help get their records digitized."
- openFDA launches open data platform for consumer protection
- Wearables and patient-centric startups evolve in health data ecosystem
- Personal data access opens new doors for patients and consumers
- Apple's Health app and other new features in iOS 8
- Wearables: Fit for business? (ZDNet and TechRepublic Special Feature)
- Wearables have a dirty little secret: 50% of users lose interest
- Wearable Device Policy download (Tech Pro Research)
- Vessyl smartcup counts the calories in everything you drink
- IBM Watson's impressive healthcare analytics capabilities continue to evolve
- Gaming healthcare: How Microsoft Kinect is revolutionizing the future of rehab
- Why you should be working in health IT
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