Why? Because the benefits of better care and less paperwork will outweigh our current fears about data breaches and inappropriate data sharing.
Whether that central location will be Redmond, Mountain View or Boston will depend on whom we trust most with our medical information.
Records are going to be Web-accessible databases stored on a server somewhere.
What kinds of records will they contain? The sky is really the limit on this question.
Promised data sets include:
- Drug prescriptions, food and drug allergies, and immunizations
- Past illnesses and hospitalizations
- Results from tests, physical exams and clinical trials
- Information from implanted medical devices
- Health-insurance information and claims
- Living wills and organ-donor instructions
- Exercise and diet recordings
- Genomic information
With this kind of sensitive information concentrated in one place, privacy and security will become mission-critical. Repeated breaches could irreparably undermine confidence in and adoption of the system.
So, what if you took the most hardened privacy advocates, put them in a room, and told them they had to issue the ideal privacy and security requirements for these electronic public health records (PHR) platforms? What would they say?
Judging from past statements, I think their concerns would mirror the EU-U.S. Safe Harbor principles.
But the advocates would also say that any PHR platform provider is, by itself, unable to ensure that data is safe and private once it leaves the platform. Microsoft or Google, for example, can’t prevent a diabetes Web site from mishandling data it extracts from the platform. Or could they? If a few companies emerged as the PHR platforms of choice, couldn’t they form a coalition similar to the Payment Card Industry Data Security Council? Couldn’t they similarly fine or expel errant platform participants? Visa has been far more effective at enforcing its PCI standards, after all, than the Department of Health and Human Services has been at enforcing HIPAA.
While there’s no traction yet on a PCI-type standard for PHRs, the question of which laws cover and should cover PHRs is the focus of debate right now. The leading PHR platforms I reviewed are not tied to a medical entity like a hospital or health insurer, and so are not covered by HIPAA.
That said, free-standing PHRs are subject to consumer-protection laws that prohibit false statements and impose security requirements.
In this environment, explained Ann Waldo, chief privacy counsel at Dossia, one of the PHR platforms, the details of a PHR’s privacy statement are crucial. They need to contain the full range of protections appropriate to the private and sensitive health information the PHRs will be safeguarding.
Once those promises are made, they become enforceable by the Federal Trade Commission, state attorneys general and plaintiffs’ lawyers. So, I think the argument for HIPAA to save the day is a canard. I think the privacy questions will resolve themselves because companies’ profits and reputations depend on it. Enormous first-mover advantages will accrue to the company that can meet and exceed the privacy expectations of the most cautious prospective users.
Who will emerge on top? Here are the leading candidates:
Microsoft Last October, it launched the HealthVault, a platform where 40 partners have brought their interoperable applications and devices. Users don’t pay to start an account on the platform. Microsoft has the advantage of being the provider of software nearly everyone is comfortable using.
Google The company that aims to organize the world’s information has launched a limited pilot at a Cleveland hospital to test its own version of a PHR platform – also free to the user. Google has the advantage of having an unparalleled reputation of being able to provide exactly what kind of information we want when we want it.
Dossia Eight corporations, including AT&T, Wal-Mart and Intel, have joined forces to create their own platform tied to Children’s Hospital in Boston. The platform will be free for their employees’ use this year or next and will ultimately run as a nonprofit open to all. Dossia’s advantage is twofold: a ready supply of insurer-provided information to the platform, and the trust people still place in their employers.
WebMD The New York-based health-information portal runs a fee-for-service Health Manager where users can store and disseminate their personal health records. WebMD’s advantage may be its simplicity, and for many Fortune 500 employees, already populated with their health care data.
Revolution Health Run by former AOL CEO Steve Case, the Washington-based competitor of WebMD offers fee-for-service Health Records Express, a place to store and disseminate medical records.
I don’t think it’s a matter of if you and I will join one of these platforms, but when. And the one we join will depend not just on privacy, but more broadly on whom we trust. On this question, it’s still anyone’s game.
Jay Cline is a former chief privacy officer of a Fortune 500 company and now president ofMinnesota Privacy Consultants. You can reach him firstname.lastname@example.org.