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English medical records are about to be given away. As GPs, we’re fighting back

theguardian.com

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Re: English medical records are about to be given away. As GPs, we’re fighting back

#51

Post by mosafet »

Silhouette wrote: post #27
chrisseaton wrote: post #12

Earlier quoted context omitted.

> is it just more unlawful data collection in the UK? What makes you think any of this is 'unlawful'?

It's surely on shaky ground. The GDPR rules are still the main ones that will apply at present, and those require stronger protections by default for sensitive types of personal data such as health data. A massive data lake like this with such a generic purpose and an opt-out permission scheme is obviously not in the spirit of those protections. For it to be permitted by the letter of the law, the government will hav…

I had a check and it looks like the law was passed in 2012[1]. They say that gave them a legal responsibility to hold clinical information, combined with instruction from government that should be enough for this to fall under another basis in GDPR without consent being required. Not saying it's right, especially with the risk of the data being shared further once they hold it, but it'd probably be difficult to challenge.

[1] https://digital.nhs.uk/about-nhs-digital/our-work/keeping-pa...

Re: English medical records are about to be given away. As GPs, we’re fighting back

#52

Post by [deleted] »

dkarp wrote: post #21

As someone who works in HealthTech in the UK, I can see why NHS Digital sees a need for this. We really should be enjoying the benefits of a centralised National Health Service in this country, but the divide and conquer management strategy gives individual GP practices and Hospitals (run by NHS Trusts) a lot of independence. That independence extends to IT systems, meaning you have various patient record systems in…

[deleted]

Re: English medical records are about to be given away. As GPs, we’re fighting back

#53

Post by chaosite »

cik wrote: post #28
dkarp wrote: post #21

As someone who works in HealthTech in the UK, I can see why NHS Digital sees a need for this. We really should be enjoying the benefits of a centralised National Health Service in this country, but the divide and conquer management strategy gives individual GP practices and Hospitals (run by NHS Trusts) a lot of independence. That independence extends to IT systems, meaning you have various patient record systems in…

This is more or less how it works in Israel. The EMR is owned and controlled by the state. Four private HMOs compete (in the literal sense) to provide services as efficiently and high quality as possible, according to their government licenses. It marries the public sector ability to build giant-ass systems for its citizens, with the private sector's ability to compete. Moving here from Canada I'm beyond shocked how…

You're right, but less, rather than more.

1. 4 HMOs total, not hundreds. That's a big difference, it's still pretty centralized.

2. The HMOs actually compete on very little, mostly customer service. They are heavily regulated and have to provide services to a spec that's spelled out by the government, including pricing.

3. These 4 HMOs are mostly historic in origin; starting a new one would probably need to be initiated by the government.

4. For example, your example of (digital) prescriptions being filled by any pharmacy: that's an regulation codified in law. And while 100% of pharmacies can fill it, only those with an arrangement with your HMO will give you the subsidized price.

Re: English medical records are about to be given away. As GPs, we’re fighting back

#54

Post by bArray »

justinclift wrote: post #19
Symbiote wrote: post #4

For anyone (like me) who is no longer resident in England, you can find your NHS number with [1], then use it (plus a UK VPN) to opt out here [2]. As I understand it, [2] covers hospital data etc, but not GP data, which is the recent data grab and the subject of the article. I have written to the GP I was last registered at to see if they still hold any data on me, and whether they were intending to share it without…

Well, that's interesting. Going to the opt-out link (your-data-matters.service.nhs.uk), gives this: Sorry, you cannot see this page This might be because: * you're outside of the UK and this service is only available in the UK I guess people outside the UK aren't considered allowed to manage their data. :(

I made a point of emailing them about this (and suggest you do so too) - I'm not sure it is legal to prevent me from managing my data, despite living outside the UK. I understand they want to prevent foreign actors from misusing the service, but this is not it.

As if making it opt-out isn't bad enough, for some, they can't even opt-out. What a s*t show this entire process has been.

What's the betting that this data is being sold for 'research' to raise a few more pounds to combat the coming economic crash?

Re: English medical records are about to be given away. As GPs, we’re fighting back

#55

Post by throwaway3699 »

chrisseaton wrote: post #50
throwaway3699 wrote: post #31

Earlier quoted context omitted.

Not really. The NHS is a function of life, as much as a publicly owned road or school. I don't owe it anything.

> This is literally going against the underlying principles of the NHS yet > I don't owe it anything

Two things can be true:

1) The NHS is free at-the-point of delivery, funded through taxes, much like schools and roads

2) That does not mean I owe them the right to unilaterally give away my data

Re: English medical records are about to be given away. As GPs, we’re fighting back

#56

Post by walshemj »

dkarp wrote: post #21

As someone who works in HealthTech in the UK, I can see why NHS Digital sees a need for this. We really should be enjoying the benefits of a centralised National Health Service in this country, but the divide and conquer management strategy gives individual GP practices and Hospitals (run by NHS Trusts) a lot of independence. That independence extends to IT systems, meaning you have various patient record systems in…

And its a real pain if you have a complex condition that spans trusts /organizations.

I have contact with 3 / 4 trusts and they have difficulty looking at each others records - also blood tests across trusts are non standard.

Re: English medical records are about to be given away. As GPs, we’re fighting back

#57

Post by arthem »

justinclift wrote: post #19
Symbiote wrote: post #4

For anyone (like me) who is no longer resident in England, you can find your NHS number with [1], then use it (plus a UK VPN) to opt out here [2]. As I understand it, [2] covers hospital data etc, but not GP data, which is the recent data grab and the subject of the article. I have written to the GP I was last registered at to see if they still hold any data on me, and whether they were intending to share it without…

Well, that's interesting. Going to the opt-out link (your-data-matters.service.nhs.uk), gives this: Sorry, you cannot see this page This might be because: * you're outside of the UK and this service is only available in the UK I guess people outside the UK aren't considered allowed to manage their data. :(

If you are outside the UK then you can download the PDF version of the form and email it to (enquiries@nhsdigital.nhs.uk) after completion.

(https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/...)

Re: English medical records are about to be given away. As GPs, we’re fighting back

#58

Post by Silhouette »

mosafet wrote: post #51
Silhouette wrote: post #27

Earlier quoted context omitted.

It's surely on shaky ground. The GDPR rules are still the main ones that will apply at present, and those require stronger protections by default for sensitive types of personal data such as health data. A massive data lake like this with such a generic purpose and an opt-out permission scheme is obviously not in the spirit of those protections. For it to be permitted by the letter of the law, the government will hav…

I had a check and it looks like the law was passed in 2012[1]. They say that gave them a legal responsibility to hold clinical information, combined with instruction from government that should be enough for this to fall under another basis in GDPR without consent being required. Not saying it's right, especially with the risk of the data being shared further once they hold it, but it'd probably be difficult to chall…

Yes, that is probably the relevant national law for NHS Digital itself.

Then presumably they're relying on GDPR points 9(2)(h) and 9(2)(i) with reference to that national law to argue that the default prohibition on processing health data in paragraph 9(1) doesn't apply.

And then they've got public interest/official authority under 6(1)(e), or perhaps compliance with a legal obligation under 6(1)(c), as a lawful basis.

But all of that just means the processing wasn't automatically prohibited under the GDPR. All the normal rules including the principles set out in Article 5 still apply as well, and those principles include purpose limitation, data minimisation, storage limitation, and integrity and confidentiality. There are also some specific obligations around professional secrecy under Article 9 because it's health data.

Given the extremely broad scope of the intended data lake here, the ambiguity about who might end up with access to it, and the extremely sensitive nature of the data, I don't think I'd want to be the one defending NHS Digital when the seemingly inevitable ICO investigation comes.

Re: English medical records are about to be given away. As GPs, we’re fighting back

#59

Post by amelius »

If this was 30 years ago, there would be no corporations involved directly, but the entire analysis of these records would be done in government institutions or academic hospitals.

Corporations would only be there to provide the hardware and basic software such as OSes.

Can we please get a law that any crowdsourced data and all derivative works belongs to the public?

And can corporations please go back to their role of building products that aid in research, such as computer hardware and software? Combining "building software and hardware" and "needing to look at data" is a source of trouble. Your software can look at the data, but not you. We'll run the software.

Re: English medical records are about to be given away. As GPs, we’re fighting back

#60

Post by [deleted] »

jarofgreen wrote: post #48
Silhouette wrote: post #16

Earlier quoted context omitted.

There are quite a few problems with that in the case of medical records. Some of this information may be urgently needed at a time when the patient is not capable of giving informed consent for its disclosure or does not have it immediately available. Some of the information may be vital to the future healthcare of the patient and would cause serious harm to them if it were lost. And in more of a more morally grey ar…

The keeping information private one is interesting, and more complex than it looks. I know of a case of someone who was having problems with NHS, requested her records, found some very nasty comments, complained, had her care switched to another team, and did so much better.

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