Wednesday, December 06, 2006

Privacy Request: Denied.

Yesterday's Guardian had a startling article on the British National Health Service's approach to patient privacy. The NHS is spending 24 billion pounds (ie, really really serious money) on wiring health care nationwide. They're providing EHRs to all physicians, linking them all up over a national network, and creating a national repository of patient-identified clinical data.

Back to the article. Patients have requested to opt out of the national network and repository, and the Government has rejected their requests!

Polls show that 53% of patients are opposed to having their data on the system, and as a result, 52% of general practitioners are opposed to providing their patient's data to the system without their patients' specific consent. Despite this overwhelming display of distrust, according to the article:

[T]he Department of Health said nobody could have genuine grounds for claiming "substantial and unwarranted distress" as a result of having their intimate medical details included on a national computer system, known as the Spine. For that reason, "it will not agree to their request to stop the process of adding their information to the new NHS database".

Yikes!! On top of the increasingly shrill reports of the technical problems the NHS project is suffering, it's hard to imagine that this project is going to get back on track anytime soon.

Back here in the colonies, we at MAeHC are also setting up data exchanges and repositories in our three pilot communities, but we're going with an opt-in approach, meaning that we won't exchange any patient's data without his/her specific, written consent.

This approach certainly takes longer and is definitely more logistically challenging than an opt-out (or the NHS approach of no-choice), but it appropriately puts the burden on us to get the trust of patients and physicians before we start letting their data fly. The very early returns on our experiment are that patients are overwhelmingly opting in -- still early, still small sample, but encouraging nonetheless. In the long run, I think this will build a deeper foundation for the whole enterprise going forward. When problems arise -- and they will arise -- patients will be more forgiving than if we hadn't asked their permission in the first place.....


Richard said...

Interesting blog! I think 24 billion pounds mentioned above should be 24 billion dollars (£12b). Though the figure does keep rising!

Joel Phillips said...

Rob Clark: Changed Man, Good Man
by Joel Phillips

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