HHS unleashes wave of public health data so software developers can create tools to raise awareness, spur action
Probably the quickest way to understand what HHS officials hope to accomplish with their recently announced Community Health Data Initiative is to turn to the latest weather forecast.
Go online or tap a smart phone and pull up the weather outlook in text, supported by maps, slick graphics and maybe even a forecast automatically customized to a specific geographical location. But whatever communications tool is used, 98% of the data on which that forecast was based originated—free of charge—from the federal government's National Oceanic and Atmospheric Administration, according to Todd Park, chief technology officer at HHS.
That's the model against which HHS hopes to pattern its new Community Health Data Initiative, Park told about 100 people gathered last week in the auditorium at the National Academy of Sciences in Washington.
“We thought that was inspiring,” Park said, addressing the half-day, official kickoff session June 2.
Park and other HHS officials outlined a plan to leverage federal-level boosterism and a more customer-friendly reorganization of the vast trove of government-controlled data to catalyze the creation of a new network of public and private software developers and healthcare data users.
Enabled by easier access to healthcare information and armed with better tools to analyze it, these new healthcare data users will be able to “raise awareness of community health performance, increase pressure on decisionmakers to improve performance, and help facilitate and inform action to improve performance,” according to a statement of purpose on the program's new Web page.
“We have a lot of data,” HHS Secretary Kathleen Sebelius said in her remarks at the launch session. HHS' hoard of data includes hospital-level information on quality measures, performance and patient satisfaction and data gathered by the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the CMS “and lots of other divisions within HHS,” Sebelius said.
“What a part of this project is about is making that data available and accessible to the public, which has never happened before,” she said.
Sebelius said a potential user of these new tools and information could be a woman with a family history of breast cancer who searches on a user-friendly application and determines she lives in a cancer cluster. That woman can leverage the information to mobilize her community and force appropriate officials “to do something about it,” Sebelius said.
“A family looking for a great place to live can look at community health data as well as crime statistics and school scores,” she said. Employers can look at health data when scouting new business locations, Sebelius said. Keeping the public data free while making it more readily accessible “is just common sense,” she said.
One of the presenters last week, Valerie Brown, a Sonoma County, Calif., supervisor and president of the National Association of Counties, is also an end-user of vendor-enhanced data. Brown said at the meeting that when her Board of Supervisors began to look at County Health Rankings data, made public in February by the Robert Wood Johnson Foundation and the University of Wisconsin's Population Health Institute, “We decided we needed more. We wanted to create a platform for change and most of all, we wanted to create a health-conscious community.”
Working with the Healthy Communities Institute, Sausalito, Calif.—whose president and CEO, Deryk Van Brunt, is a clinical associate professor of biostatistics at the University of California at Berkeley's School of Public Health—they developed the website, Healthy Sonoma. The site presents text and graphics backed by data from the California Health Interview Survey showing that 28% of Sonoma residents are obese and that the number has been trending upward since 2003. It also graphs the data by age, gender and race/ethnicity and provides links to resources.
One way the county has attacked the problem is by focusing on young people and trying to improve their eating habits through consciousness-raising programs at school and Boys & Girls Clubs of America meetings, and encouraging the development of farmers markets and more than 600 community gardens, Brown said in an interview.
“We have 44% of our young people age 12 to 19 who are obese,” Brown said. “What we're trying to do is get people to be more conscious of what they grow and eat. The technology gives us a look at where we are and allows us to see what changes we make.”
Van Brunt said in an interview that the system links to summaries of 1,200 effective public health programs across the country. An example Van Brunt gave at the kickoff was a CDC-sponsored program in Salinas, Calif., focusing on Latinos and low-income populations to address obesity and diabetes.
“It's a combination of a school program, work-site program and community education program, and they had significant improvement in healthy weight and in controlled blood pressure,” he said.
“You can lift information about hundreds of topics in a community, not just obesity. Essentially, here, in summary, what we have is a system that really promotes transparency and accountability,” Van Brunt said.
HHS is seeking to promote that kind of free-flowing, grass-roots experimentation. William Corr, HHS deputy secretary, made it clear the department won't control, choreograph or pay for the applications that will spring from the new initiative. “Our role is simply supplying high-quality data and let innovators take it from there.”
Healthcare data junkies and even some consumers who click through some of the hypertext links on the Community Health Data Initiative Web page will likely find themselves in familiar territory. Listed are links to AHRQ's national healthcare quality and disparities reports, the CDC's Healthy People 2010 database and the CMS/Hospital Quality Alliance Hospital Compare database. “A lot of data we've put on our CHDI website has been available for years, but it was hard to find and use,” Park said.
In addition to the familiar numbers, however, the data sets also will include Medicare data at various geo-political levels on disease prevalence, quality, cost and healthcare service utilization never before made available to the public, according to HHS.
Initially, the data files will be downloadable from the HHS website, but the National Center for Health Statistics, a division of the CDC, is developing a data “warehouse” and portal that should be up and running by the end of this year. It will make the data even more readily accessible via computerized Web services.
Former CDC epidemiologist David Van Sickle was another one of seven developers called on to showcase their innovative healthcare data-handling tools from the podium during the kickoff session last week. About a dozen more application developers and data users exhibited at the meeting. Combined, their wares are what Park described as “just a glimpse of the beginning.”
Van Sickle says he likes what he sees so far from the government's effort to make its data more accessible. “I think this is a great initiative,” he said. “In hindsight, it's going to seem like the obvious thing that should have been done and hadn't. It's going to enable a lot of innovation, not only on the research side, but on the consumer side.”
Van Sickle is an asthma specialist and is the founder and CEO of Reciprocal Sciences, in Madison, Wis. His latest research project is with the CDC's Air Pollution and Respiratory Health Branch, working to map and characterize asthma in the rural Midwest.
That research will be based in part on another Van Sickle project, Asthmapolis, which uses any one of three data-gathering tools, plus computerized mapping software, to track the use of an asthma patient's inhaler.
One inhaler tool the project developed is a square, plastic, postage-stamp-sized recording device Van Sickle calls a “Spiroscout,” which readily clamps atop an inhaler canister. When the patient presses on the Spiroscout, it uses global positioning technology to determine the time and location when the inhaler was used. The user recharges the battery on the device by plugging it into a USB port on a computer, which also transfers usage and geographical data from the device to Asthmapolis for recording and plotting on a digital map. Use of the inhaler serves as a proxy for an asthma attack.
Van Sickle said he's no longer issuing a somewhat larger attachment that uses cellular phone services to transmit patient data. While the epidemiologist in him yearns for the up-to-the instant data the phone attachment provides, Van Sickle said patients found it to be somewhat clunky and had little use for real-time data transfer.
What seems to be a promising compromise, according to Van Sickle, is a mobile phone application. It requires users to manually input their usage data, but couples it with geographical coordinates. “It grabs the location from the phone and puts it into the database in real time,” Van Sickle said. The resulting map created by participating patients can be accessed over the phone and provides “a way of reviewing asthma in your community so you can know what's going on around you in real time.”
So far, about 300 people are using the various Asthmapolis devices and services, Van Sickle said. An updated version of the phone application will be available to the public for downloading in a week or so. The USB devices, which have been in limited production, could be publicly available by September, he said.
The application gives patients an easy way to contribute public health data that otherwise isn't being collected, Van Sickle said. Meanwhile, “The mobile diary helps them record their daily medications and it sees if you haven't taken your medication, it sends you a little message.”