mrk
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Post by mrk on May 26, 2021 9:27:54 GMT
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keitha
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Post by keitha on May 26, 2021 13:19:25 GMT
ERM isn't this a fairly serious breach of DATA PROTECTION / GDPR.
Surely they have to seek consent when you submit the data to share it with others. I'm not legally trained but worked in IT for many years and it was always a given that if we had data for purpose A We could not use it for purpose B or let 3rd parties have access without the consent of each of the data subjects.
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mrk
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Post by mrk on May 26, 2021 14:47:52 GMT
ERM isn't this a fairly serious breach of DATA PROTECTION / GDPR. The data collection project is actually called " GPDPR". I wonder if that was done on purpose so it gets confused with GDPR. I wouldn't be against my fully anonymised data to be used for research purposes. But in this case it's only "pseudo-anonymised": I have little trust in the data not ending up in the wrong hands I'm afraid. See e.g. the 2017 Equifax data breach.
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adrianc
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Post by adrianc on May 26, 2021 15:01:08 GMT
ERM isn't this a fairly serious breach of DATA PROTECTION / GDPR. The data collection project is actually called " GPDPR". I wonder if that was done on purpose so it gets confused with GDPR. I wouldn't be against my fully anonymised data to be used for research purposes. But in this case it's only "pseudo-anonymised": I have little trust in the data not ending up in the wrong hands I'm afraid. See e.g. the 2017 Equifax data breach. That "pseudo anonymisation" is enough for me... I'm opting out. They've been suspiciously coy about it all, which alone leads me to suspect they know damn well this is not in the benefit of patients and there will be an outcry.
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cb25
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Post by cb25 on May 26, 2021 15:40:07 GMT
I used www.nhs.uk/your-nhs-data-matters/manage-your-choice/ to check my current choice - it was confirmed as "Your choice ... Your confidential patient information can not be used". Had to input my name, d.o.b, postcode (as I couldn't be bothered to find my NHS number), get and enter a security code.
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shirehorse
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Post by shirehorse on May 26, 2021 15:51:16 GMT
Be warned there are two opt outs.
The second is the one with an upcoming deadline of 23rd June.
This is an extremely scummy process and most people will either get these confused or not see anything about this and be opted in by default (I imagine the vast majority).
*If I have this wrong please let me know, but after a bit of searching I see no other option apart from a paper/email submission.
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mrk
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Post by mrk on May 26, 2021 16:04:52 GMT
Be warned there are two opt outs.
The second is the one with an upcoming deadline of 23rd June.
This is an extremely scummy process and most people will either get these confused or not see anything about this and be opted in by default (I imagine the vast majority).
*If I have this wrong please let me know, but after a bit of searching I see no other option apart from a paper/email submission.
Indeed, sending the "Type 1" opt out form to your GP seems the most important step. Found some clear instructions here: medConfidential
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travolta
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Post by travolta on May 26, 2021 16:30:51 GMT
You think they actually HAVE your records to share . IMO working in a surgery practically everybodies records are lost/incomplete/muddled/mishandled or complete fantasy. One more time 'lets hear it for the NHS'  |
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keitha
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Post by keitha on May 27, 2021 23:00:08 GMT
You think they actually HAVE your records to share . IMO working in a surgery practically everybodies records are lost/incomplete/muddled/mishandled or complete fantasy. One more time 'lets hear it for the NHS' Incomplete I can believe in September 2019 I cut myself badly and had to go to A&E. Believe it or not they wanted to send me away because the only record they had was for a hearing test, and as the nurse put it you only appear to be a pair of ears, I Can't put a hand injury because you don't have one. It took 20 minutes of Nurses time on the Phone to IT to get me created as a person rather than just ears.
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Post by bracknellboy on May 28, 2021 6:44:18 GMT
Also in 2019. I was referred by my GP to specialist unit following an incident that resulted in me be taken to A&E. As I recall, the specialist unit did not have access to any records from the A&E incident because it was a different health trust. That seemed somewhat sub-optimal.
Back on topic: I'm not sure I've understood the implications of this thread. I'm pretty sure I've previously opted to allow my data to be shared, based on statements that it was anonymised, and for medical uses. What is the nub of what is being said here ? That the data isn't actually anonymised ?
EDIT: I would have thought if the data is to be helpful for medical research purposes, then DOB (perhaps reduced to month/year ? or week/month/year) and postcode were reasonable things to be included if the data is to be useful. NHS number is another matter.
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mrk
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Post by mrk on May 28, 2021 13:14:31 GMT
Back on topic: I'm not sure I've understood the implications of this thread. I'm pretty sure I've previously opted to allow my data to be shared, based on statements that it was anonymised, and for medical uses. What is the nub of what is being said here ? That the data isn't actually anonymised ? EDIT: I would have thought if the data is to be helpful for medical research purposes, then DOB (perhaps reduced to month/year ? or week/month/year) and postcode were reasonable things to be included if the data is to be useful. NHS number is another matter. What concerns me is: 1) Data is not truly anonymised. 2) Not clear who will have access to it and what they'll do with it. (See e.g. NHS data deal with Palantir.) 3) Everybody is being automatically opted in, and very few people are aware that this is happening.
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cb25
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Post by cb25 on May 28, 2021 13:30:58 GMT
Back on topic: I'm not sure I've understood the implications of this thread. I'm pretty sure I've previously opted to allow my data to be shared, based on statements that it was anonymised, and for medical uses. What is the nub of what is being said here ? That the data isn't actually anonymised ? EDIT: I would have thought if the data is to be helpful for medical research purposes, then DOB (perhaps reduced to month/year ? or week/month/year) and postcode were reasonable things to be included if the data is to be useful. NHS number is another matter. What concerns me is: 1) Data is not truly anonymised. 2) Not clear who will have access to it and what they'll do with it. (See e.g. NHS data deal with Palantir.) 3) Everybody is being automatically opted in, and very few people are aware that this is happening. My partner happened to need to go to our local surgery a couple of days ago, so delivered Type 1 opt out forms for the pair of us. The receptionist told my partner "that's funny, we've had a few of these delivered over the past few days, but we don't know why". Clearly, they haven't been informed either.
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keitha
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Post by keitha on May 28, 2021 16:23:22 GMT
Back on topic: I'm not sure I've understood the implications of this thread. I'm pretty sure I've previously opted to allow my data to be shared, based on statements that it was anonymised, and for medical uses. What is the nub of what is being said here ? That the data isn't actually anonymised ? EDIT: I would have thought if the data is to be helpful for medical research purposes, then DOB (perhaps reduced to month/year ? or week/month/year) and postcode were reasonable things to be included if the data is to be useful. NHS number is another matter. What concerns me is: 1) Data is not truly anonymised. 2) Not clear who will have access to it and what they'll do with it. (See e.g. NHS data deal with Palantir.) 3) Everybody is being automatically opted in, and very few people are aware that this is happening. Date of birth could be reduced to year, postcode reduced to first 4 or 5 digits. NHS number is a big no
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Post by bernythedolt on May 29, 2021 14:38:45 GMT
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cb25
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Post by cb25 on May 30, 2021 12:56:56 GMT
Guardian reporting "GPs warn over plans to share patient data with third parties in England. Doctors say NHS Digital’s proposals could erode the relationship between them and their patients" here |
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