Two years ago, the potential of government making health information as useful as weather data felt like an abstraction. Healthcare data could give citizens the same “blue dot” for navigating health and illness akin to the one GPS data fuels on the glowing map of geolocated mobile devices that are in more and more hands.
After all, profound changes in entire industries, take years, even generations, to occur. In government, the pace of progress can feel even slower, measured in evolutionary time and epochs.
Sometimes, history works differently, particularly given the effect of rapid technological changes. It’s only a little more than a decade since President Clinton announced he would unscramble global positioning system data (GPS) for civilian use. President Obama’s second U.S. chief technology officer, Todd Park, estimated that GPS data is estimated to have unlocked some $90 billion dollars in value in the United States.
In the context, the arc of the Health Data Initiative (HDI) in the United States might leave some jaded observers with whiplash. From a small beginning, the initiative to put health data to work has now expanded around the United States and attracted great interest from abroad, including observers from England National Health Service eager to understand what strategies have unlocked innovation around public data sets.
While the potential of government health data driving innovation may well have felt like an abstraction to many observers, in June 2012, real health apps and services are here — and their potential to change how society accesses health information, deliver care, lowers costs, connects patients to one another, creates jobs, empowers care givers and cuts fraud is profound. The venture capital community seems to have noticed the opportunity here: according to HHS Secretary Sebelius, investment in healthcare startups is up 60% since 2009.
Headlines about rockstar Bon Jovi ‘rocking Datapalooza’ and the smorgasbord of health apps on display, however, while both understandable and largely warranted, don’t convey the deeper undercurrent of change.
On March 10, 2010, the initiative started with 36 people brainstorming in a room. On June 2, 2010, approximately 325 in-person attendees saw 7 health apps demoed at an historic forum in the theater of Institute of Medicine in Washington, D.C, with another 10 apps packed into an expo in the rotunda outside. All of the apps or services used open government data from the United States Department of Health and Human Services (HHS).
In 2012, 242 applications or services that were based upon or use open data were submitted for consideration to third annual “Health Datapalooza. About 70 health app exhibitors made it to the expo. The conference itself had some 1400 registered attendees, not counting press and staff, and was sold out in advance of the event in the cavernous Washington Convention Center in DC. On Wednesday, I asked Dr. Bob Kucher, now of Venrock Capital and the Brookings Institution, about how the Health Data Initiative has grown and evolved. Dr. Kucher was instrumental to its founding when he served in the Obama administration. Our interview is embedded below:
Revolutionizing the healthcare industry — in HHS Secretary Sebelius’s words, reformulating Wired executive editor Thomas Goetz’s ‘latent data’ to “lazy data” — has meant years of work unlocking government data and actively engaging the developers, entrepreneurial and venture capital community. While the process of making health data open and machine-readable is far from done, there has been incontrovertible progress in standing up new application programming interfaces (APIs) that enable entrepreneurs, academic institutions and government itself to retrieve it one demand. On Monday, in concert with the Health Data Palooza, a new version of HealthData.gov launched, including the release of new data sets that enable not just hospital quality comparisons but insurance fees as well.
Two years later, the blossoming of the HDI Forum into a massive conference that attracted the interest of the media, venture capitalists and entrepreneurs from around the nation is a short-term development that few people would have predicted in 2010 but that a nation starved for solutions to spiraling healthcare costs and some action from a federal government that all too frequently looks broken is welcome.
“The immense fiscal pressure driving ‘innovation’ in the health context actually means belated leveraging of data insights other industries take for granted from customer databases,” said Chuck Curran, executive director and general counsel or the
Network Advertising Initiative, when interviewed at this year’s HDI Forum. For example, he suggested, look at “the dashboarding of latent/lazy data on community health, combined with geographic visualizations, to enable “hotspot”-focused interventions, or info about service plan information like the new HHS interface for insurance plan data (including the API).
Curran also highlighted the role that fiscal pressure is having on making both individual payers and employers a natural source of business funding and adoption for entrepreneurs innovating with health data, with apps like My Drugs Costs holding the potential to help citizens and businesses alike cut down on an estimated $95 billion dollars in annual unnecessary spending on pharmaceuticals.
Curran said that health app providers have fully internalized smart disclosure : “it’s not enough to have open data available for specialist analysis — there must be simplified interfaces for actionable insights and patient ownership of the care plan.”
For entrepreneurs eying the healthcare industry and established players within it, the 2012 Health Data Palooza offers an excellent opportunity to “take the pulse of mHealth, as Jody Ranck wrote at GigaOm this week:
Roughly 95 percent of the potential entrepreneur pool doesn’t know that these vast stores of data exist, so the HHS is working to increase awareness through the Health Data Initiative. The results have been astounding. Numerous companies, including Google and Microsoft, have held health-data code-a-thons and Health 2.0 developer challenges. These have produced applications in a fraction of the time it has historically taken. Applications for understanding and managing chronic diseases, finding the best healthcare provider, locating clinical trials and helping doctors find the best specialist for a given condition have been built based on the open data available through the initiative.
In addition to the Health Datapalooza, the Health Data Initiative hosts other events which have spawned more health innovators. RockHealth, a Health 2.0 incubator, launched at its SXSW 2011 White House Startup America Roundtable. In the wake of these successful events, StartUp Health, a network of health startup incubators, entrepreneurs and investors, was created. The organization is focused on building a robust ecosystem that can support entrepreneurs in the health and wellness space.
This health data ecosystem has now spread around the United States, from Silicon Valley to New York to Louisiana. During this year’s Health Datapalooza, I spoke with Ramesh Kolluru, a technologist who works at the University of Louisiana, about his work on a hackathon in Louisiana, the “Cajun Codefest,” and his impressions of the forum in Washington:
One story that stood out from this year’s crop of health data apps was Symcat, an mHealth app that enables people to look up their symptoms and find nearby hospitals and clinics. The application was developed by two medical students at Johns Hopkins University who happened to share a passion for tinkering, engineering and healthcare. They put their passion to work – and somehow found the time (remember, they’re in medical school) to build a beautiful, usable health app. The pair landed a $100,000 prize from the Robert Wood Johnson Foundation for their efforts. In the video embedded below, I interview Craig Munsen, one of the medical students, about his application. (Notably, the pair intends to use their prize to invest in the business, not pay off medical school debt.)
There are more notable applications and services to profile from this year’s expo – and in the weeks ahead, expect to see some of them here on Radar, For now, it’s important now to recognize the work of all of the men and women who have worked so hard over the past two years create public good from public data.
Releasing and making open health data useful, however, is about far more than these mHealth apps: It’s about saving lives, improving the quality of care, adding more transparency to a system that needs it, and creating jobs. Park spoke with me this spring about how open data relates to much more than consumer-facing mHealth apps:
As the US CTO seeks to scale open data across federal government by applying the lessons learned in the health data initiative, look for more industries to receive digital fuel for innovation, from energy to education to transit and finance. The White House digital government strategy explicitly embraces releasing open data in APIs to enable more accountability, civic utility and economic value creation.
While major challenges lie ahead, from data quality to security or privacy, the opportunity to extend the data revolution in healthcare to other industries looks more tangible now than it has in years past.
Business publications, including the Wall Street Journal, have woken up to the disruptive potential of open government data As Michael Hickins wrote this week, “The potential applications for data from agencies as disparate as the Department of Transportation and Department of Labor are endless, and will affect businesses in every industry imaginable. Including yours. But if you can think of how that data could let someone disrupt your business, you can stop that from happening by getting there first.”
This growing health data movement is not placed within any single individual city, state, agency or company. It’s beautifully chaotic, decentralized, and self-propelled, said Park this past week.
“The Health Data Initiative is no longer a government initiative,” he said. “It’s an American one. “