Abstract

Keywords: Open data, HIT, EHR, EMR, PHR, health apps, health care applications, patient engagement.
Citation: O’Malley K. Health Datapalooza 2012: Apps are making a difference. J Participat Med. 2012 Jun 19; 4:e13.
Published: June 19, 2012.
Competing Interests: The author has declared that no competing interests exist.
 

The Health Data Initiative Forum III (nicknamed the “Health Datapalooza”) was a two-day conference celebrating the open data movement, held on June 5-6, 2012 in Washington, DC. The conference was sold out, but a live webcast was available for many of the presentations. This author took advantage of the webcast. Despite limitations and some technical difficulties on Day 2, on the whole it offered an engaging virtual experience. Both live and virtual attendees kept up a steady stream of tweets throughout the forum. The program was a combination of upbeat speeches about the climate of innovation and public-private sector cooperation, and enthusiastic demonstrations by developers of new health care applications.

Todd Park, the US Chief Technology Officer, delivered an animated keynote address, giving a brief history of the Health Data Initiative (HDI) and Health Datapalooza. Park cited the development of GPS as a primary inspiration for HDI. That technology was made possible by the release of government data and it is now a $90 billion industry that has made countless lives easier. Imagining the potential of opening up government health data to private-sector innovators, the Institute of Medicine (IOM) and the US Department of Health and Human Services (HHS) formed HDI in 2010. The first Health Datapalooza drew 45 people; this year there were more than 1600 attendees in Washington. The webcast attendees peaked at nearly 400, making a total of about 2000 people at the 2012 forum. Most were tech entrepreneurs, businesspeople, policy makers, and patient advocates.

Park claimed proudly that more HHS data is more easily accessible than ever, and he touted HealthCare.gov, CMS.gov, and Blue Button as designed to empower Americans to take control of their own health care by giving access to information about benefits of government programs. In the case of Blue Button, patients can get access to their own health data. Later in the day, HHS Deputy Secretary Bill Corr announced the relaunch of HealthData.gov, which will offer double the data sets of last year’s version.

The private sector is a driving force of the open data movement, and Park lavished praise on companies and entrepreneurs, noting that the Blue Button concept has been picked up by several companies and that industry-sponsored “developer challenges” have spurred the development of a myriad of new applications and new companies. Park also spoke enthusiastically about the rest of the program, giving a very compelling preview and urging everyone not to miss any of it. He thanked the forum’s sponsors, which included HHS, IOM, the Robert Wood Johnson Foundation, the California Health Care Foundation, Esri, Healthways, the Jewish Healthcare Foundation, and Feinstein Kean Healthcare.

The keynote address on Day 2 was delivered by HHS Secretary Kathleen Sebelius who, like Park, was excited about the innovations made possible by unlocking data, but also acknowledged that the health care system still needs much improvement. Sebelius was optimistic, saying “We have at least opened the door to innovation by offering incentives to begin rewarding improvement,” and citing the growth of Accountable Care Organizations and citing evidence that diabetes patients with access to electronic health records are 600% more likely to have good care. “There is now a demand for processes that cut waste and improve care.”

Presentations

The program was densely packed, including demonstrations of 100 health apps (selected from a field of 240 entries) and presentations from 25 organizations, including one by musician/humanitarian Jon Bon Jovi which was a standout moment of the forum.

Bon Jovi’s talk was one of several that showcased mobile technology solutions to community health problems. Quickly dispelling any suspicions that he was a shallow “celebrity endorser,” he spoke with feeling about how Project REACH was inspired by his and his wife’s frustrating attempt to help a homeless employee in their nonprofit restaurant in affluent Red Bank, New Jersey. Project REACH challenged developers to come up with a mobile phone app that would allow caseworkers, or anyone who wants to help a homeless person, to find local shelter openings in real time. The five finalists presented their impressive entries later in the day, and Bon Jovi’s Soul Kitchen will debut the apps.

The Healthy Communities Network, which won first place in the Community category of apps, exemplified the strong role that public health departments have taken in using data to improve health. The Network’s community dashboard presents a wide range of information (eg, housing affordability, obesity, diabetes) at a local level to illustrate the state of the community’s health, and it drills down to different populations so that health departments and other organizations can address specific problems in those populations.

Many attendees seemed impressed by Health Insights in Real-time from the University of Rochester, which uses tweets to take snapshots of individuals’ illnesses and literally put them on the map. In the demonstration, pins on a map of New York City located several sick people and their entire social networks of Twitter friends. Laying that over a map of pollutants, or traffic, public health officials can examine the relationship between sickness and pollutants, traffic, etc.

To show HDI’s commitment to empowering consumers, apps for consumers were a big part of the forum. Highlights included Castlight Health’s transparency portal, where consumers can shop for what they need and compare cost, and Aetna’s iBlueButton, which can be downloaded by Aetna customers for the iPad or iPhone, with an Android version coming soon.

The third category of Apps Demos was “For Care,” and much of this was missed by the webcast watchers because of technical difficulties. Virtual attendees did get to see the demonstration of Archimedes IndiGO, an individualized decision support tool that spans multiple diseases and promises physiologically and clinically realistic modeling. It has been adopted by a few dozen hospitals and is well received by both doctors and patients, who find IndiGO’s quantitative advice helpful: not simply “Lose weight,” but “If you lose weight, x, y, and z will happen.” The webcast came back online in time to show the winners of the Go Viral Collegiate Challenge. The first-prize app was VaxNation, designed to help families keep track of their immunizations and created by students from Baylor College, Rice University, and the University of Texas.

The afternoon webcasts only covered the Apps Demos and not the breakout sessions, so virtual attendees missed hearing about such tantalizing topics as “How to Turn Data into Meaningful Information for Business Problems,” “Consumer Engagement Using Health Data,” “Novel Data Sources & Crowdsourcing for Powering Business, Public Good & Health,” and “Protecting Privacy & Security in the New Health Data Ecosystem.” One item from the consumer engagement panel discussion was immediately made available online, though: the Society of Participatory Medicine’s announcement of the beta version of its Seal Program, which will identify clinicians and patients who follow the principles of participatory medicine.

Conclusion

Health IT-driven conferences have been part of the participatory medicine movement for a few years. But now we are finally seeing some evidence that the wonderful apps cooked up by clever entrepreneurs are actually gaining traction with users. Health Datapalooza 2012 showcased some truly exciting apps and evidence that they are making a difference in health care.

Copyright: © 2012 Kathleen O’Malley. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.