“It was just the beginning,” Park said of the 2010 inaugural event.
Over the next couple of years, the Datapalooza earned must-attend status among health care innovators, with the audience increasing more than fivefold and the number of submissions increasing more than tenfold, with 242 companies and nonprofits competing fiercely for 100 showcase spots. The growth was reflected throughout the participant spectrum, with mature and emerging firms, student teams, and even celebrities all presenting their prototypes that had the dual benefit of advancing the HHS mission.
Aetna, a mature firm looking to offer a more personalized experience for customers calling in to its nurse call center, designed an IT cockpit. When a customer called a nurse, a series of applications opened on his or her screen, providing location-specific government data—related to everything from environmental factors to quality measures—in order to guide advice. In this way, a patient discharged from a hospital in Georgia could get tailored assistance from a nurse in Ohio, from the booking of appointments at the best place to seek treatment to the latest evidence from the National Institutes of Health on managing the condition. “This helps the patient use a bunch of public information, but does so through one of the oldest and most effective user interfaces ever designed, which is called, ‘Talking to another human being,’” Park said. “The point is that in the open data revolution, the innovations happening on top of open data are about much, much, much more than the apps. The apps are real, but you also have information in rich human services.”22
The startup Healthagen was intent on reducing unnecessary emergency room visits which, according to the nonprofit National Quality Forum, waste nearly $40 billion per year. So it added a new dimension to its already-popular iTriage smartphone application. That application, created by two emergency room doctors, had allowed users to input information about their symptoms, read about possible remedies, and learn whether they could seek care for the condition at a lower cost, outside of the hospital. The firm’s new iteration leveraged the smartphone’s Global Positioning System (GPS) capability to offer a local list of health centers subsidized by the government for lower-cost care. It even allowed users to book appointments. Already, iTriage has been downloaded nearly 10 million times in more than 80 countries and, as of this writing, had a 4.5 rating (out of 5) from users on Apple’s app store. “Better yet, there have been testimonials, including ‘this saved my life, because I got help for something I didn’t realize was life threatening,’” Park said. Healthagen grew so fast that Aetna acquired the company in December 2011 and continued investing in product improvements. The application recently integrated a Centers for Disease Control data set to improve the symptom analyzer.
Student teams also made contributions, notably a pair of emergency room residents from the Johns Hopkins University. They used data from the Centers for Disease Control’s bio-surveillance program and built Symcat, a more accurate resource for patient self-diagnosis than was available through websites such as WebMD. While WebMD provides high-quality reference medical information, Symcat can—with the assistance of the user providing symptom and family history information—actually estimate the probability of certain conditions. It’s the difference between telling a user what cancer is and telling that user whether there’s a reasonable chance that he or she has it. The application won a $100,000 Robert Wood Johnson prize and catalyzed the formation of a company.
Somehow, though, it was a larger-than-life celebrity, Jon Bon Jovi, who made this movement seem the most real.23
The activist musician took center stage as one of the first speakers at the 2012 Datapalooza.24 Roughly two minutes into an unusually stiff performance, he tossed aside his script as if it were a busted guitar, preferring to riff from the heart.25
Bon Jovi spoke slowly, softly, and passionately about his JBJ Soul Kitchen restaurant in Red Bank, New Jersey, where diners leave donations of whatever they can afford and, if they can’t afford anything, volunteer their labor instead. He then spoke specifically of one man who worked in the kitchen so late one night that Bon Jovi and his wife suspected, correctly, that the man had no place else to go. After a frustrating attempt to find an available bed online, Bon Jovi came to believe that those with limited resources—and a reliance upon public transit—would have virtually no success hunting down comfortable shelter in suburban New Jersey. Nor would anyone who wanted to use the Internet help.
Bon Jovi continued his story by recounting the January 2012 event that he had attended as a member of the President’s Council for Community Solutions. I had attended, too, to announce the tech program associated with the Summer Jobs + initiative. At a bathroom break, we—two guys from New Jersey with quite dissimilar backgrounds—met in the hallway. He asked if he could apply open data concepts to the homelessness issue, and that brief discussion, followed by brainstorming, had led to the Project Reach developer challenge. The challenge called upon the public to use open data from the Departments of Veterans Affairs as well as Housing and Urban Development to address veteran homelessness through an OpenTable-style application that provided information about bed, clothes, food, and medical assistance at and around New Jersey shelters. It had produced five formidable finalists, and a punch line to Bon Jovi’s speech.
“The power of ‘we’ allows us the opportunity to truly make a difference,” he told the Datapalooza audience.
Without question, Bon Jovi’s star power had made a difference, too, as was illustrated when he left the dais to a chorus of applause from the standing-room crowd of 1,500. Still, Bon Jovi couldn’t upstage the man who presented more than an hour earlier, wearing glasses and a suit. In an article about the event, a Forbes.com reporter expressed surprise that Todd Park, not the global superstar, received the really raucous response. But it didn’t surprise me. He hadn’t sold millions of records or starred in more than a dozen films. Park had, however, risen through the ranks to succeed me as the nation’s Chief Technology Officer. And he had energized two communities—in the technology and health care spaces—with his infectious energy and irrepressible passion. Rather than wow with wonk speak, he peppered his presentation with colloquialisms like “awesomeness” and closed his address with “Rock On!” In settings such as this, he was invariably the one who left the crowd calling for encores.
“I just felt like I was incredibly lucky to be able to kick things off with this amazing gathering of people,” Park said months later. “There are many evangelists for the movement, and I felt like, more than anything, I was channeling them. That’s what is so exciting about this. It’s a movement with so many leaders, powered by so much innovation across the board, around the country, people who believe the truly great innovation ecosystems are decentralized, self-propelled, and open. There were many, many, many impressive people at Datapalooza, not quite as famous as Bon Jovi, but who were just as enthusiastic. It was fantastic, really, really awesome.”
I mentioned earlier that Healthagen, in its iTriage application, used GPS as a tool to provide open government data (a list of medical providers) in a more manageable, user-friendly format, based on location. But GPS itself was the product of a series of earlier open government initiatives.
The U.S. military had been tinkering with navigation systems as early as the 1940s, with independent aims and moderate success throughout the next few decades.26 In 1973, the Defense Department designated the Air Force to consolidate the various established concepts into a comprehensive system called the Defense Navigation Satellite System (DNSS).27 The first experimental GPS satellite launched in 1978, with more launched by the mid-1980s, and all available only to the military.
Then, in 1983, a Korean commercial airline, en route from Anchorage, Alaska, to Seoul, mistakenly entered the Soviet Union’s airspace. A Soviet fighter jet shot it down, killing 269 people. To minimize future navigational errors, President Ronald Reagan allowed civilian access to GPS. But that access came with
a catch—to protect national security, he imposed a filter that blunted the accuracy, as compared to what was available to the military. President Bill Clinton, an advocate of using GPS for “addressing a broad range of military, civil, commercial, and scientific interests, both national and international” throughout his two terms, took away the restrictions prior to leaving office. On May 1, 2000, he ordered an end to the intentional degrading of GPS accuracy: “The decision to discontinue Selective Availability is the latest measure in an ongoing effort to make GPS more responsive to civil and commercial users worldwide . . . This increase in accuracy will allow new GPS applications to emerge and continue to enhance the lives of people around the world.”
Propelled by the government’s support, more private sector entities began experimenting in this space. Those innovators began offering a variety of commercial applications. Prices for GPS chips fell dramatically, allowing phone carriers to offer navigation as an inexpensive, standard feature in products. And the GPS industry—requiring roughly $1.3 billion a year from the U.S. Treasury for procuring satellites and furthering systems development—has grown into a $65 billion enterprise.28 That includes an array of smartphone apps helping users find anything from an art museum to an aunt’s house.
In the mid-2000s, Dr. David Van Sickle had a more critical cause in mind.29 While working as a respiratory disease detective in the Epidemic Intelligence Service at the Centers for Disease Control and Prevention (CDC) in Atlanta, he didn’t need to dig much to identify a major problem in the health care system. That was easy as breathing—breathing for him, anyway. “People think about asthma, and think we must have a handle on it in the U.S.,” Van Sickle said. “But the grim reality is that most patients’ asthma in this country is uncontrolled. There’s a higher rate of going to the hospital than there should be. We have been doing the same thing about asthma for years, and we have made basically no dent in hospitalizations. The majority of those people think they are doing fine, so no one treats them with a course correction. And, so, there’s inexcusable morbidity. There’s this really ridiculous gap between what we should be able to do and what we’ve been able to accomplish.”
In his view, this has been largely a product of information gaps on both the public health and clinical sides of the equation. During his time at the CDC, including his work examining asthma outbreaks due to mold exposure in the aftermath of 2005’s Hurricane Katrina, he kept coming across the same obstacles: asthma data that was often years old and long outdated by the time he saw it; data that only accounted for deaths and hospitalizations rather than informative events such as school and work absences. Due to these limitations, research at the public health level was often done by “carpet-bombing a community” rather than targeting specific, smaller areas.
These gaps made it nearly impossible to tackle the issue in any productive, proactive, expedited individual way. “You would never have to ask a credit card company to review data on an annual basis,” he said. “But you have to ask public health or health care to do that? This is vastly behind where other industries are.”
Nor was America an outlier. While at the CDC, Van Sickle read about an acute asthma cluster in Barcelona. “It sent a bunch of people to the hospital and a bunch of people died,” he said. “The investigative team finally asked where people were when they were having symptoms. They mapped that, and finally figured out that the filters hadn’t been installed correctly in the harbor silos, which meant that when people were loading soybeans, it created a potent soybean dust. It was the first time we recognized that as a powerful allergen. But it took them ten years to figure out what was happening.”
America certainly doesn’t have that sort of time for delays in discovery, not with its pressing health care cost crisis: those costs are rising sharply and seemingly without end, with an expectation they will far exceed their already-excessive current chunk of the Gross Domestic Product in the United States. According to the World Bank, the U.S. spent 17.9 percent of its GDP on health care, compared to 11.2 percent for Canada, 9.3 percent for the United Kingdom, and 5.2 percent for China.30 There’s a crying need for innovation aimed at greater efficiency, and a focus on preventative measures that will allow patients to avoid factors that could trigger a condition, and thus further strain the system. There’s a need, above all, to empower doctors and patients.
That’s what Van Sickle set out to do after leaving the CDC, armed with a generous fellowship from the Robert Wood Johnson Foundation to serve as a Health and Society Scholar at the University of Wisconsin-Madison.31 “I had this great mandate to do something, to solve a problem that had always been bugging me,” he said.
And he had this great tool, GPS, to use to improve public health. Early during his time in Wisconsin, Van Sickle decided to attach an asthma inhaler to electronics. The resulting device, called a Spiroscout, created a time and GPS location record of symptoms as the inhaler was used. The onset of those symptoms could be linked to a place—and thus, to the elements of exposure. If the person was using the inhaler more than twice per week, it probably meant an emergency room visit was imminent.
Van Sickle initially built a small batch of those devices, “just to show I wasn’t completely crazy.” He benefited from participants’ understanding that, by sharing information, they might help others avoid symptoms. Still, he attempted to address privacy concerns. “It was done sensibly and protected,” he insisted.
Over time, the devices became more advanced, smaller, and with better battery life.32 He has also changed his vantage point, choosing to come at the problem from the private sector—from “industrial size, not professional size, without everything that is in the way on the academic side.” He started a company, Asthmapolis, to improve asthma management and public health surveillance, striving to lower costs associated with asthma while providing a novel data stream for health improvement. By 2013, his device had earned FDA approval, his hypothesis that information could lower asthma attacks had been validated in testing in North Carolina and Kentucky, and his business had attracted $5 million in venture capital to tackle a market of more than 20 million asthma patients in the United States alone.
Patients with uncontrolled asthma spend thousands more per year than those with controlled asthma. As more health systems enter into population health contracts with insurance companies, taking responsibility for improved outcomes, there is an emerging market incentive to adopt a program such as Van Sickle’s and integrate it into a physician’s regular practice.
“The doctor can take the data from a daily list for the patient, make it meaningful, and get it back to the patient,” Van Sickle said. “Such as, ‘You should not be having symptoms every night. Here’s what is going on with you.’ It’s personalized guidance, personalized education, captured from daily life and put to use.”
At the White House, we saw the importance of Van Sickle’s work. So we invited him to a June 10, 2011, event, and honored him as one of our Champions of Change.33 These weekly gatherings were designed to bring attention to innovators, educators, and builders who, in our view, were “Winning the Future Across America,” starting in their communities. Through this initiative, we came across people from a wide range of backgrounds, but who all had one thing in common: they successfully and creatively moved a cause forward, improving their communities and, by extension, the country. On June 10, our list of champions was narrowed to those who did so through the use of open data.
One of those we honored, Bay Area real estate broker Leigh Budlong—whose Zonability app allowed prospective commercial tenants in San Francisco to understand zoning limits in their area—captured the spirit of the day in an online post: “Whenever I hear people are bummed out by government, I try to tell them about this very cool and seemingly quiet movement underway . . . data is awesome and figuring out how to make it useful to a target audience is the reward.”34
Another champion was a part-time chick
en farmer named Waldo Jaquith. As a secondary sidelight from his duties as a webmaster at the University of Virginia’s Miller Center, Jaquith had launched Richmond Sunlight, a volunteer-run site that kept close tabs on the activities of the Virginia legislature, including manually uploading hundreds of hours of video of floor speeches, tagging relevant information on bills and committee votes, and inviting the public to comment on legislation. Jaquith had also earned a Knight Foundation fellowship to convert state government codes across the country into online machine-readable formats; shortly after the Champions ceremony, we would hire him to design Ethics.gov.
Then there was the champion trio of Bob Burbach, Dave Augustine, and Andrew Carpenter.35 While working together at a San Francisco education nonprofit called WestEd, they had stumbled upon an Apps for America 2 contest sponsored by the nonprofit organization Sunlight Labs, requiring the use of a data set from Data.gov. “We wanted to show government that cool things can happen when they make data available,” Burbach said.
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