Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

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

theguardian.com

Post reply on HN
Print view View original

21–30 of 83 posts

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

#21

Post by dkarp »

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 use around the country and a set of standards and APIs mandated to allow them to communicate.

I would personally prefer those patient records to be on software provided and administered by a technical organisation with the expertise to understand the security risks involved and working full time on that problem. Hospitals and GPs could then get on with treating patients rather than having to employ their staff to figure out the tech side. So why isn't NHS Digital doing that instead?

I expect most people actually believe the NHS already have their medical records, and in a sense they do, it just has many different custodians all around the system.

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

#22

Post by Broken_Hippo »

wiz21c wrote: post #11
Camas wrote: post #10

NHS response to this and similar allegations Collecting GP data - advice for the public: https://digital.nhs.uk/data-and-information/data-collections...

From the page : "You can opt out of sharing your data" No no no triple no. Don't opt me in. Full stop. I'll opt in if I want to. 99% of people just don't get it enough to opt out. So please, take a default that protects people first.

...take a default that protects people first.

I'm not convinced opting out is the thing that protects people. More information going to the folks that can use it to help people is the option with the most protection for folks. Having health care that is responsive in the right ways helps people. Better medicine is better for everyone.

Folks like you - the ones with strong opinions - can opt out. It is like this because more people participate, much like organ donor programs get more folks by a "yes by default" policy. And like organ donation, more is better in this case.

If you have trust issues with the government or don't trust the safety of the rollout, perhaps elect a better government.

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

#23

Post by chrisseaton »

Silhouette wrote: post #20
chrisseaton wrote: post #15

Earlier quoted context omitted.

> So please, take a default that protects people first. Their argument is that having high-quality data to plan healthcare is protecting people. If people want the state to manage and pay for your healthcare, the state needs information to plan that for everyone. You can already 'opt out' entirely by purchasing your own healthcare if you aren't prepared to contribute.

The state has been planning national healthcare in the UK since shortly after WW2 without needing this before. So far, I have yet to see any argument from any medical professional that the proposed centralisation of fully detailed individual patient records is reasonable or necessary for the proper commissioning of personal healthcare within the NHS system. Evidently the doctors objecting in the linked piece don't bu…

> So far, I have yet to see any argument from any medical professional that the proposed centralisation of fully detailed individual patient records is reasonable or necessary for the proper commissioning of personal healthcare within the NHS system.

The health service itself is arguing for it.

> it is already possible for research groups to contact patients with certain conditions indirectly

As the health service describes, an issue with this is that asking people to opt-in creates health planning assumptions that are biased, harming some groups.

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

#25

Post by insomniacity »

Silhouette wrote: post #3

They're at it again. This one seems like another care.data only possibly worse. For those who would like to opt out, see here: https://medconfidential.org/how-to-opt-out/ Note that if you haven't previously opted out from similar plans for data sharing, you'll probably need to opt out of two separate systems this time, one for sharing your GP records and one for sharing records from other sources like hospitals. The…

Fortunately you can do the edge cases via email: https://medconfidential.org/how-to-opt-out/

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

#26

Post by butterzone »

If you swap out private insurance companies for NHS (due to differences in funding), this is similar to the path the US is on right now. Within the next 1-3 years private insurance companies will know even more about your health than any single provider, and will use this more detailed insight to improve how they model, risk, and determine benefits for you in their favor. The people in charge of the funding fueling healthcare want to use data to improve their control of the money.

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

#27

Post by Silhouette »

chrisseaton wrote: post #12
Dah00n wrote: post #9

Is this possible because of Brexit or is it just more unlawful data collection in the UK? If I (in Denmark) switch GP my new GP can't see my journals without me filling out a form to allow it and hospitals definitely can't access them no matter what as it is two independent systems.

> 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 have to rely on one or more of the specific provisions relating to public health or the like, and given that even those still have quite a lot of specific compliance requirements, it's not immediately obvious to me which one(s) would allow something as broad as this.

Obviously under our political system the government can legally do whatever it wants if it can get a law through Parliament to say so, but to achieve that they'd have to be open about what they're doing and convince enough MPs and Lords that it's justified.

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

#28

Post by cik »

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 much more efficient, higher quality, and cheaper this system is. I could never go back now.

For example: the second I get a prescription it's available in 100% of the pharmacies in the country (that carry my drug). All I have to do is walk in to the one I want, swipe y card, and ya'ala done. I can even check on an app what pharmacies have said drug in stock, and plot a route there.

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

#29

Post by Zenst »

abz10 wrote: post #5

I’m guessing the primary use of this data will be for US pharmaceutical companies to find out exactly how much the UK market is worth so they know how much they can pay lobbyists to put pressure on Uk-US trade negotiations.

No as they can already get that from drug sales figures via the distribution suppliers like https://www.alliance-healthcare.co.uk/pharmacy-solutions/who... and few other players in the market who do all the logistics of supplying drugs to hospitals and pharmacies.

I worked at Unichem (now alliance-healtcare) upon the system that would produce that data that other companies would buy. No patient specific - just volume of drugs for area's and with that, still happens today.

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

#30

Post by Silhouette »

chrisseaton wrote: post #23
Silhouette wrote: post #20

Earlier quoted context omitted.

The state has been planning national healthcare in the UK since shortly after WW2 without needing this before. So far, I have yet to see any argument from any medical professional that the proposed centralisation of fully detailed individual patient records is reasonable or necessary for the proper commissioning of personal healthcare within the NHS system. Evidently the doctors objecting in the linked piece don't bu…

> So far, I have yet to see any argument from any medical professional that the proposed centralisation of fully detailed individual patient records is reasonable or necessary for the proper commissioning of personal healthcare within the NHS system. The health service itself is arguing for it. > it is already possible for research groups to contact patients with certain conditions indirectly As the health service de…

The health service itself is arguing for it.

Branding aside, there is no single health service in England. The NHS is made up of many organisations and they cooperate to provide each individual's healthcare. To be clear, it is NHS England and the DHSC who are apparently pushing for this, and neither of those organisations has a direct clinical role.

Post reply on HN