Just about a year ago I wrote about Britain's Connecting for Health program's privacy policy or, more appropriately, their lack thereof. Their approach at the time can best be described as "opt-NOT" -- patients getting care through the NHS would automatically have their data shared on the "Spine" (the national HIE). No fooling around with the niceties of opt-in vs opt-out -- patients could only opt-out by opting out of getting their care from the publicly-funded health service that they pay dearly for.
The NHS has since backed off from this stance and now allows an opt-out policy. That's still a far cry from the opt-in approach taken by MAeHC, and in the context of a burgeoning US movement toward "personally-controlled" health data management, it's downright archaic.
The latest report is that despite this change in policy, physicians themselves are rebelling against the system: 2/3 of NHS family physicians say that they will boycott data-sharing in the system according to a recent poll (see Family doctors to shun national database of patients' records). In a country where individuals have historically deferred to the government on issues of information access, this is a pretty stunning development.
Our policy in the MAeHC project is to allow patient opt-in, meaning that no information will be made available to other entities without the specific permission of patients. Our current opt-in rate is about 93%.
While an opt-in approach clearly has some short-term risks -- such as, slower adoption of systems by physicians, delays in achieving the benefits of clinical data-sharing -- it provides a firmer foundation for the overall enterprise. In the end, we won't be able to reap the benefits of clinical integration unless we build systems that both patients and clinicians can trust.
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I think the other key benefit of opt-in programs for patients or companies is that it forces the "provider" of the program to articulate a value-proposition. When it is mandatory, it allows people to push their agenda.
If you are using data to help people stay healthy and informed rather than simply cut costs, they should be very interested.
Communicating with patients (more from a corporate perspective) is a common topic on my blog - Patient Centric Healthcare (www.georgevanantwerp.com).
This is a great point George. Opt-in appropriately places the burden on the HIE and the participating "providers" to "sell" this to patients. Our approach has been to think about how to shift the paradigm from "permission" to "demand". Instead of begging patients for consent, how do we demonstrate enough value for them to start demanding data exchange?
Thanks!
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