An announcement on January 24 didn’t get the large amount of attention it deserved: Apple and 13 prominent health systems, including prestigious centers like Johns Hopkins and the University of Pennsylvania, disclosed an agreement that would allow Apple to download onto its various devices the electronic health data of those systems’ patients — with patients’ permission, of course.
It could herald truly disruptive change in the U.S. health care system. The reason: It could liberate health care data for game-changing new uses, including empowering patients as never before.
Since electronic health records (EHRs) became widespread over the last decade, there has been growing frustration over the inability to make electronic data liquid — to have it follow the patient throughout the health system and to be available for more sophisticated analysis in support of improved patient care and research. Most efforts to liberate and exchange health data have focused on getting doctors and hospitals to share it with one another. Those efforts continue, but progress has been slow.
Frustration has increased interest in a very different approach to data sharing: Give patients their data, and let them control its destiny. Let them share it with whomever they wish in the course of their own health care journey.
Several technology companies — including Google and Microsoft — tried this in the early 2000s, but their efforts failed. There just wasn’t that much electronic health data available at the time, since only a tiny fraction of doctors and hospitals had electronic records. Health systems were reluctant to share what data existed, seeing it as a valuable proprietary asset. The technology for giving outside entities access to electronic records kept by hospitals and doctors was underdeveloped. And EHR vendors were uninterested in promoting such access because the demand was weak and data sharing could spur competition from other vendors.
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Those obstacles have now mostly melted away. Electronic health records and digitized health data are now ubiquitous. Various federal incentives and regulations now require providers to share data with other providers and with patients or face significant financial penalties. The Argonaut Project, a voluntary private sector collaborative, has provided guidelines for an open source, standardized application programming interface (API) that provides ready access to data stored in providers’ electronic records. Think of APIs as gateways into electronic data warehouses that now populate the health care landscape. Of note, the federal government now requires all vendors of electronic records to include these open APIs in their products to be federally certified.
A world in which patients have ready access to their own electronic data with the help of facilitators like Apple creates almost unfathomable opportunities to improve health care and health. First, participating patients would no longer be dependent on the bureaucracies of big health systems or on understaffed physician offices to make their own data available for further care. This could improve the quality of services and reduce cost through avoiding duplicative and unnecessary testing.
Second, the liberation of patients’ data makes it possible for consumer-oriented third parties to use that data (with patients’ permission) to provide new and useful services that help patients manage their own health and make better health care choices. Such consumer-facing applications — if they are designed to be intuitive, useable, and accurate — have the potential to revolutionize patient-provider interactions and empower consumers in ways never before imagined in the history of medicine. Imagine Alexa- or Siri-style digital health advisors that can respond to consumer questions based on users’ unique health care data and informed by artificial intelligence. Health care could start to function much more like traditional economic markets.
Nevertheless, this vision of the future faces obstacles and uncertainties.
First, large numbers of hospitals and doctors have to follow the lead of the 13 systems that have already jumped on board. There are encouraging signs that many more will join, but ultimately, there needs to be a clear business case for both providers and their IT allies to invest in this new partnership. Perhaps the most compelling would be widespread consumer demand for the service. For that demand to materialize, consumers have to receive something they value in return for giving third parties like Apple access to their data. This means that Apple and its future competitors will have to develop nifty consumer-facing apps that solve consumer health-related problems easily and cheaply. Those apps simply don’t exist at the moment.
Second, the opportunities for fraud and abuse in this new world of data access are daunting. Most consumers will want to delegate to third parties the job of accessing, storing, managing, and analyzing their data. Making sure those third parties are trustworthy is critical, and unscrupulous actors will inevitably take advantage of unsophisticated patients. Health data is extremely valuable on illicit markets. And even honest but unsophisticated data stewards can create huge problems if they don’t adequately protect patient information. Federal and private sector organizations are trying to develop a voluntary but enforceable code of conduct to govern the behavior of private data stewards. This would be an important first step toward assuring that consumers are not victimized on the way to a brighter health care future.
Third, once new companies start to develop consumer-facing health applications based on patients’ own health care data, the quality of those applications could become an important issue. If they offer advice, it needs to be reliable. If they promise a service, they need to deliver. Some applications may fall within the existing regulatory authorities of U.S. federal agencies like the Food and Drug Administration or the Federal Trade Commission. If not, the question of whether and how to assure that the advice furnished consumers is valid and reliable will certainly arise as a matter of public policy.
These problems notwithstanding, the announcement of this collaboration between leading American providers of health and information technology services likely signals a new era in health and medicine. The partnership and its results will not solve all our health care problems. But they could really shake things up. And that is what the U.S. health system needs.