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care.data deba.cle
Feb. 6th, 2014 01:14 pmYesterday I went to my GP surgery for a routine appointment. Since I was there anyway I asked to opt out1 from care.data (FAQ).
I found that:
* my GP surgery had never heard of care.data.
* they assured me that they would never share my details without my explicit consent
* they were rather shocked when I showed them the leaflet that I'd had through the door. The reception manager I spoke to hadn't had a leaflet through her own door.
* they'd not had any training or guidance on how to deal with people who wanted to opt out.
Worse still:
* for people that had asked to opt out, they'd been opting them out of summary care records2 instead. I discovered this when they gave me a form to opt out of that, and insisted that this must be the thing I'd been referring to. I do not want to opt out of summary care records.
I have submitted an FOI request to the Department of Health here.
ETA: I have contacted the HSCIC on 0845 3006016 and reported the matter; they will contact my GP. Please do the same if you find another GP practice that's not been informed.
1 I don't think that the scheme is awful in principle; I'm basically pro medical data being used to improve future healthcare (after all, that's kinda my job) — but I'd rather not be an early-adopter until I've had time to research more about the implementation details.
2 Summary care records enable electronic sharing of medical details between clinicians.
Comments note: I really don't want this to turn into a discussion on whether it's right that medical records can be used for research on an opt-out basis or whether Jeremy Hunt is the Antichrist; there are plenty of other fora discussing that. I'm concerned with the implementation of the opting-out here.
I found that:
* my GP surgery had never heard of care.data.
* they assured me that they would never share my details without my explicit consent
* they were rather shocked when I showed them the leaflet that I'd had through the door. The reception manager I spoke to hadn't had a leaflet through her own door.
* they'd not had any training or guidance on how to deal with people who wanted to opt out.
Worse still:
* for people that had asked to opt out, they'd been opting them out of summary care records2 instead. I discovered this when they gave me a form to opt out of that, and insisted that this must be the thing I'd been referring to. I do not want to opt out of summary care records.
I have submitted an FOI request to the Department of Health here.
ETA: I have contacted the HSCIC on 0845 3006016 and reported the matter; they will contact my GP. Please do the same if you find another GP practice that's not been informed.
.
1 I don't think that the scheme is awful in principle; I'm basically pro medical data being used to improve future healthcare (after all, that's kinda my job) — but I'd rather not be an early-adopter until I've had time to research more about the implementation details.
2 Summary care records enable electronic sharing of medical details between clinicians.
Comments note: I really don't want this to turn into a discussion on whether it's right that medical records can be used for research on an opt-out basis or whether Jeremy Hunt is the Antichrist; there are plenty of other fora discussing that. I'm concerned with the implementation of the opting-out here.