Apple will not liberate your health records
Until Tim Cook and Judy Faulkner sing Kumbaya on stage together, your health records will remain barely accessible, buried under suffocating layers of bureaucracy.
Note: This post is best read while listening to Gary Jules’ rendition of Mad World.
To much fanfare last month, Apple announced that HealthKit — its framework for managing your health-related data on its platform — would add support for all the nitty gritty details in your health records. They demonstrated a screenshot that displayed immunization records and cholesterol measurements. They touted partnerships with a dozen, well-known hospital systems including Cedars-Sinai and Johns Hopkins that would, after a doctor visit, push new medical records directly to your phone. Apple has thrown the gauntlet — one previously thrown by the decaying corpse of Google Health and mortally wounded Microsoft HealthVault — boldly promising to build a bridge between electronic health record systems and their iHardware. I don’t think they will succeed, at least not in any meaningful way.
The reality is that your data is kept under lock and key within the Fort Knox of Judy Faulkner’s Epic Systems, and without her cooperation, mainstream data portability will be dead in the water. Almost everyone’s complete health record involves data stored in Epic. They are to health providers what Windows is to your PC. You have to tango with Microsoft to build a wildly successful Windows app, and you can’t make real change in healthcare IT without a little love from Epic. Yet Judy has been coldly silent in the wake of Apple’s announcement. Would it be possible for Epic and its ilk to create user friendly ways for patients to access and delegate access to their data? Of course. There are even three Federal Regulations (HIPAA, HITECH, and 21st Century Cures) that, taken together, require comprehensive, patient-accessible data conduits. So why can’t we all move our healthcare data around as easily as I can share all my Facebook data with any app that has a “Login with Facebook” button? Because in healthcare, as one prominent venture capitalist once told me, data is currency. According to three managing directors from L.E.K. consulting, the bulk of healthcare IT investment activity goes to companies that “regard data as the source of business value.” If patients en-masse can liberate their own data, said business value evaporates almost overnight. In other words, making it hard to move your data around, is a feature of the Electronic Health Record, not a bug.
In Steve Kraus’ optimistic CNBC article, he talked about all the ways consumers could benefit from unfettered health data. I share his vision for the way the world could — and should — be. But there is an ocean of difference between universal access to your complete health record, including code-level claims data, billing records, and raw doctors notes; and a partnership with twelve hospitals that enables you to see when you had your last tetanus shot. I agree with him, that the most successful apps, in the beginning, will help consumers weather the financial hardships that come with our convoluted healthcare system. But I don’t think you can do much with the limited amount of data that Apple has pried from its partners. This may be a step in the right direction, but it’s barely an inch’s worth of distance in a marathon whose finish line sees Epic and other EHR systems tear down the walls that surround your data.
There is a silver lining here, though. Apple’s efforts are supposedly built atop the Fast Health Interoperability Resources (FHIR) standard, which is itself built to support a complete health record. Perusing the HealthKit specification, there is yet no mention of FHIR, only the outdated and less usable Clinical Data Architecture (CDA) standard. But the Apple developer forums are full of hopeful entrepreneurs that want to build apps that can leverage FHIR’s support for a comprehensive health record. A growing ecosystem of apps that leverage a complete medical record will be a glorious part of the solution.
I truly hope that I’m wrong, but I think we are a long way off from true portability of your medical record. The walls around your data are made of money. We’ll only see real progress when providers, payers, and patients together realize the benefits that would come from clinical and financial transparency. When public opinion outweighs financial incentive, EHR companies will enthusiastically cooperate, and data will flow freely.
