Turning Health Data Into Information

Healthcare is not a science problem; it’s an information problem. Thomas Goetz,  TEDMED 2010

Bank and airline customers rely on sophisticated systems that allow them to personalize and track complex data. But consumers of the services and products that comprise modern health care –  the patients -- currently are offered much more rudimentary data handling. Faxed prescriptions, paper medical charts and X-rays on film -- though not uncommon -- are examples of outdated methods of recording and sharing data.

The forces needed to improve patient information systems are gaining momentum, said Todd Park, US Chief Technology Officer (CTO). Speaking June 18 at The Commonwealth Club in San Francisco, Park acknowledged the movement is in its infancy but said the nation’s healthcare information system is “light years ahead of where it was two years ago.”

Park’s trademark enthusiasm was also evident as he talked about the campaign to provide newly-authorized access to government data to software developers and entrepreneurs. The federal Health Data Initiative seeks to provide Health and Human Services (HHS) data to the public, free and with no strings attached, in effort to trigger the creation of health-related applications.

The campaign has precedent in other government bodies. For example, The Weather Channel exists because National Oceanic and Atmospheric Administration (NOAA) data was made public. Location-based services such as real-time driving directions rely on GPS, a system of satellites also owned by the government.

The HHS effort began in 2010 when the agency published its Open Government plan, which says in part that its “vast stores of data” are:

…a remarkable national resource which can be utilized…to increase awareness of health and human services issues, generate insights into how to improve health and well-being, spark public and private sector innovation and action, and provide the basis for new products and services that can benefit the American people.

Two key elements necessary to turn this public data resource into better health and financial reward are 1) a robust private/public partnership and 2) a rethinking of the traditional roles of doctors and patients, who are increasingly taking greater responsibility for making decisions about their care.

Creative and business partnerships are gaining momentum in spurts of work known as “hackathons” and “datapaloozas,” and in business incubators across the country. Software coders and engineers are collaborating with healthcare providers to unlock the information contained in the data.

To create something useful, designers need to ask the right questions: of the data, of healthcare providers and of the public. Although patients couldn't previously see it, HHS has collected data about patient satisfaction and safety in US hospitals for years, primarily for hospital administrators to use. HHS also knows that 80 percent of adult Internet users now search online for health information and nearly 90 percent of Americans have a cell phone.  Under the new initiative, they asked what the data could mean to patients.

Creating a new purpose and meaning for the data -- enabling informed patient choice – led to “Hospital Compare.” The site allows users to easily search for hospitals by zip code and to compare patient satisfaction and safety scores using a familiar interface that works like comparison shopping.

But the biggest driver of change is the private sector, which has enthusiastically taken up the “free the data” challenge. Park estimated that 90 percent of the more than 200 groups who competed at the June Datapalooza were startups. Park raved about the results achieved by some of the coders. The teams with the least healthcare experience tackled some of the toughest public health challenges because "they didn’t understand that some healthcare problems are considered intractable,” Park said with a chuckle. Successful healthcare app designers bring consumers user-experience knowledge: they know how to unlock the potential of the data, he said. After all, “we have a deluge of data, but a paucity of information.”

Eve Harris is a Bay Area writer and patient advocate blogging at www.eveharris.com