Scrutable

An article from the Byline Times has been getting a lot of attention on Twitter since its publication yesterday. Its headline:

The Government Wants to Sell Your GP Medical Records.

It's about the plan by NHS Digital to collect patient data from 1 July 2021.

The article seems to be a combination of good background and what-if-ery. It describes the debacle that was the care.data project with which this NHS Digital scheme seems to have a lot in common. I know I was one of the 1 million who opted out, in large part because there seemed significant potential for data to be sold for commercial purposes.

The NHS Digital project seems to have caught people by surprise, so much so that they have this on their Mythbusting page,

Why have I not heard about the national data opt-out before?

When the national data opt-out was launched in May 2018 there was a full public campaign. This included national media activity and posters and leaflets in a range of health settings including GP practices, dentists, hospitals and pharmacies. These posters and leaflets are still available in these settings. There is also a section on the public-facing NHS website here: nhs.uk/your-NHS-data-matters

Three years is a long time ago and those posters and leaflets are in medical environments where those not receiving medical care were unlikely to have seen them. It also means that anyone not living in the UK at that time has no idea of the proposals. So I understand why many are concerned.

The concerns are that patient data will end up being sold and that the data will not be kept safe. From the article,

Like the Office for National Statistics and Genomics England, NHS Digital does now have what is known as a ‘safe setting’ – a secure data processing facility with layers of rules, approvals, protections and monitoring. But the Government has not made it mandatory for patients’ GP data to only be accessed via this highly secure, heavily audited environment. And so, in all likelihood, NHS Digital’s customers will continue to buy copies.

NHS Digital does audit some (but not all) of its customers which receive copies of data. Several of these audits have revealed that, not only do organisations break the ‘protections’ in place, but that these do not stop them from getting data once they have been broken. Some of these protections are legal obligations, but audits have shown that one public body did not even conduct a legally-required data protection impact assessment.

While the concerns are valid there doesn't really seem to be much to go on and it feels like it's verging on scaremongering. NHS Digital do charge admin fees to access the data but it looks like access is largely restricted to non-commercial uses. Commercial requests must "clearly demonstrate how this benefits the health and social care system" but who knows how significant those benefits have to be before access is granted.

So my questions are:
1) Is this scaremongering?
2) How can NHS Digital gain access to our GP-held patient records without getting our consent? I thought GDPR prevented this sort of thing?
3) Should we opt out?

Fishnut wrote: ↑

Thu May 20, 2021 3:59 pm

3) Should we opt out?

No. We should be asked whether we want to opt in.

(Tomp calling me a c.nt in 3, 2, ...)

Some more background data here: https://digital.nhs.uk/data-and-informa ... -available

Some info on the policies and practices around sharing data can be found here: https://digital.nhs.uk/data-and-informa ... -data-with

They mention pharmaceutical companies as being a potential recipient. I don’t think that is an inherently bad idea so long as it’s not possible to link the data to an individual and the intended outcomes would include better medical treatments.

None of my previous medical records have been digitised, only those generated in the last 4 years since we moved here (possibly some from Dunstable, I just don't know.). As a result the doctor at any consultation know nothing of my medical history, which bones I have broken, the fact that I nearly died from mumps encephalitis at 5 years old or even which childhood vaccinations I have had. Are any of these facts relevant? No idea, I'm not a doctor.

So what have they got to share? I can't imagine any cash strapped GP surgery paying someone to type in all the details from that thick elastic band bound folder of doctor's scrawls that sits languishing on a shelf somewhere. Are perhaps only the last 8 years details all that is needed? Again no idea.

The fact that I nearly died from mumps just conceivably be relevant to some data mining research in the future, I doubt it will ever figure on my records though, in my lifetime.

Response from the NHS to the article and other social media messages going around

https://digital.nhs.uk/services/nationa ... edia-posts

I'm not sure, but given the amount of sh.t that I share with Google, I'm not too concerned.

A certain Dr Ben Goldacre is behind one of the major initiatives to get properly anonymized NHS data available for research.

This event may be of interest to folk on this thread:

https://www.eventbrite.co.uk/e/trusting ... 4379277575

The Covid-19 pandemic has both accelerated the trend of digitalisation, and highlighted how data and technology can support public health responses to even the most serious crises. However, public opinion divides on whether this acceleration is to be welcomed or feared. This year, Demos and BT partnered to run a national conversation on these issues using the open source deliberation tool Polis. At the event, we will present the insights from our research into public attitudes to responsible technology and discuss what the implications are.

I’m not sure where I should ask this...
I think it has come up before, but some considerable time ago (possibly in the old place).
Anyway...

I’m seeing variations on this in some Basefook groups. Can anyone give me some ammunition to say it’s not something to worry about. My recollection is that it’s anonymised data and the implication that it’s your personal details is misleading.

Or is it?

This is a good place to start: https://digital.nhs.uk/services/nationa ... edia-posts

CF

Cardinal Fang wrote: ↑

Sun May 30, 2021 3:53 pm

This is a good place to start: https://digital.nhs.uk/services/nationa ... edia-posts

CF

Thanks. I’ve just posted that as a reply to the one I screen grabbed in FB.

Ooh, and got a ‘thanks for clarifying’ message straight away

Doctors are concerned.

Doctors have warned that plans to pool medical records on to a database and share them with third parties could erode the relationship between them and patients.

The warning came as the Royal College of GPs wrote to NHS Digital urging it to better communicate with the public about the plans and their options for opting out...

The Doctors’ Association UK (DAUK), a campaigning and lobbying organisation comprised of doctors, said it was concerned this would “erode the doctor/patient relationship, leaving patients reluctant to share their problems due to fears of where their data will be shared”.

The article also notes,

The data will be anonymised and given “codes” that can be used to reveal the identity of the data’s owners if there is a “valid legal reason”. Privacy campaigners have said the plans are “legally problematic” and patients have been given a limited window to opt out.

I'm not an expert in these things, but if you can reveal the identity of the person then that doesn't exactly sound like it's been anonymised to be.

There's also the fact that anyone who decides to withdraw consent only withdraws their information going forward, not information already held.

Personally, I'm erring on not consenting to let my information be used for this. I don't have anything to hide and am all for data being made available for research purposes but this sounds far too similar to the previous highly-flawed and ultimately scrapped scheme. It feels like the only lessons the government has learned from that debacle is to keep their plans quiet, not to better protect patients' privacy.

As far as I know, there are sensible reasons for it being possible to ‘de-anonymise’ the data for use by a third party. That would be done in circumstances like someone participating in a clinical trial, or if someone wanted to receive medical care from another doctor (eg at a private clinic). Both of those would only occur with the patient’s consent.

I assume it’s also possible in the event of a public health emergency.

The big issue though is who else could or would get access. My problem with the information provided is that they’ve provided lots of information on the process (ie who decides) but very little on the criteria to be used when making a decision.

Woodchopper wrote: ↑

Sun May 30, 2021 6:37 pm

As far as I know, there are sensible reasons for it being possible to ‘de-anonymise’ the data for use by a third party. That would be done in circumstances like someone participating in a clinical trial, or if someone wanted to receive medical care from another doctor (eg at a private clinic). Both of those would only occur with the patient’s consent.

I assume it’s also possible in the event of a public health emergency.

But surely patient exchange of records in those cases are already allowed? And are done with the explicit consent of the patient, where possible. The problem with this new database is that we have no idea what our data is being used for. If someone deems it necessary to deanonymise it, do we get told? Do we get the option of refusing to have it deanonymised? Or having implicitly consented through not telling our GPs we don't want our records to be added to this database, do we just have to accept that our data is now not our own and even if we change our mind at a later date, our records are now available to whomever NHS Digital deem fit?

Fishnut wrote: ↑

Sun May 30, 2021 7:01 pm

Woodchopper wrote: ↑

Sun May 30, 2021 6:37 pm

As far as I know, there are sensible reasons for it being possible to ‘de-anonymise’ the data for use by a third party. That would be done in circumstances like someone participating in a clinical trial, or if someone wanted to receive medical care from another doctor (eg at a private clinic). Both of those would only occur with the patient’s consent.

I assume it’s also possible in the event of a public health emergency.

But surely patient exchange of records in those cases are already allowed? And are done with the explicit consent of the patient, where possible. The problem with this new database is that we have no idea what our data is being used for. If someone deems it necessary to deanonymise it, do we get told? Do we get the option of refusing to have it deanonymised? Or having implicitly consented through not telling our GPs we don't want our records to be added to this database, do we just have to accept that our data is now not our own and even if we change our mind at a later date, our records are now available to whomever NHS Digital deem fit?

Good questions, and the answers to which really should be made clear.

individualmember wrote: ↑

Sun May 30, 2021 5:05 pm

jaap wrote: ↑

Sun May 30, 2021 4:56 pm

Is that the same issue as discussed in this earlier thread?

Yes. Somehow I’d missed that

Anyone mind if I were to merge the threads?

Woodchopper wrote: ↑

Sun May 30, 2021 7:51 pm

Anyone mind if I were to merge the threads?

Fine by me

Fishnut wrote: ↑

Sun May 30, 2021 7:01 pm

Woodchopper wrote: ↑

Sun May 30, 2021 6:37 pm

As far as I know, there are sensible reasons for it being possible to ‘de-anonymise’ the data for use by a third party. That would be done in circumstances like someone participating in a clinical trial, or if someone wanted to receive medical care from another doctor (eg at a private clinic). Both of those would only occur with the patient’s consent.

I assume it’s also possible in the event of a public health emergency.

But surely patient exchange of records in those cases are already allowed? And are done with the explicit consent of the patient, where possible. The problem with this new database is that we have no idea what our data is being used for. If someone deems it necessary to deanonymise it, do we get told? Do we get the option of refusing to have it deanonymised? Or having implicitly consented through not telling our GPs we don't want our records to be added to this database, do we just have to accept that our data is now not our own and even if we change our mind at a later date, our records are now available to whomever NHS Digital deem fit?

You can find out who NHS data bas been provided to and for what reason here: https://digital.nhs.uk/services/data-ac ... a-releases

I downloaded the Excel and after a quick skim the recipients appear to be: other bits of the NHS, universities, other parts of the government such as county councils, and companies that provide services to the NHS. I also found one entry for Novavax regarding its clinical trial of a Covid vaccine.

Fishnut wrote: ↑

Sun May 30, 2021 7:01 pm

Woodchopper wrote: ↑

Sun May 30, 2021 6:37 pm

As far as I know, there are sensible reasons for it being possible to ‘de-anonymise’ the data for use by a third party. That would be done in circumstances like someone participating in a clinical trial, or if someone wanted to receive medical care from another doctor (eg at a private clinic). Both of those would only occur with the patient’s consent.

I assume it’s also possible in the event of a public health emergency.

But surely patient exchange of records in those cases are already allowed? And are done with the explicit consent of the patient, where possible. The problem with this new database is that we have no idea what our data is being used for. If someone deems it necessary to deanonymise it, do we get told? Do we get the option of refusing to have it deanonymised? Or having implicitly consented through not telling our GPs we don't want our records to be added to this database, do we just have to accept that our data is now not our own and even if we change our mind at a later date, our records are now available to whomever NHS Digital deem fit?

Actually, thinking on it. One consequence of anonymization is that they aren't going to be able to tell you that your data has been provided to another party. They don't know exactly whose data they are using, and even if they were to be able to work it out, telling you would stop it being anonymous.

Woodchopper wrote: ↑

Sun May 30, 2021 8:02 pm

You can find out who NHS data bas been provided to and for what reason here: https://digital.nhs.uk/services/data-ac ... a-releases

I'm feeling even more confused. If the data is already available for these uses then what's this new thing that's happening from July 1st?

Woodchopper wrote: ↑

Sun May 30, 2021 8:14 pm

Actually, thinking on it. One consequence of anonymization is that they aren't going to be able to tell you that your data has been provided to another party. They don't know exactly whose data they are using, and even if they were to be able to work it out, telling you would stop it being anonymous.

But that doesn't square with the article I linked to which said,

The data will be anonymised and given “codes” that can be used to reveal the identity of the data’s owners if there is a “valid legal reason”.

There are a couple of different meanings of "deanonymized" - firstly the official method, using the codes to reverse lookup someone's ID in the database, and secondly the unofficial method, that can identify individuals using cross-correlations of anonymized datasets that are broken down in different ways.

Don't be surprised if articles and journalists conflate the two things.

dyqik wrote: ↑

Sun May 30, 2021 8:25 pm

There are a couple of different meanings of "deanonymized" - firstly the official method, using the codes to reverse lookup someone's ID in the database, and secondly the unofficial method, that can identify individuals using cross-correlations of anonymized datasets that are broken down in different ways.

Don't be surprised if articles and journalists conflate the two things.

Given the complete lack of any useful information coming out of NHS Digital on this, articles and journalists are all we've got. And if they aren't clear on the facts then how the hell are any of the rest of us going to be?

Fishnut wrote: ↑

Sun May 30, 2021 8:18 pm

Woodchopper wrote: ↑

Sun May 30, 2021 8:02 pm

You can find out who NHS data bas been provided to and for what reason here: https://digital.nhs.uk/services/data-ac ... a-releases

I'm feeling even more confused. If the data is already available for these uses then what's this new thing that's happening from July 1st?

They have a new system which replaces the old one which has been around for a decade.

Some info here:
https://www.ukauthority.com/articles/nh ... r-gp-data/

Fishnut wrote:

Woodchopper wrote: ↑

Sun May 30, 2021 8:14 pm

Actually, thinking on it. One consequence of anonymization is that they aren't going to be able to tell you that your data has been provided to another party. They don't know exactly whose data they are using, and even if they were to be able to work it out, telling you would stop it being anonymous.

But that doesn't square with the article I linked to which said,

The data will be anonymised and given “codes” that can be used to reveal the identity of the data’s owners if there is a “valid legal reason”.

It depends which data you want to know about.

If they were to pass on anonymised data which included data about you then I doubt that you could be informed individually.

Another matter would be identifiable data, such as for a clinical trial. I assume that you’d need to give consent for that to be passed on.

Woodchopper wrote: ↑

Sun May 30, 2021 7:51 pm

individualmember wrote: ↑

Sun May 30, 2021 5:05 pm

jaap wrote: ↑

Sun May 30, 2021 4:56 pm

Is that the same issue as discussed in this earlier thread?

Yes. Somehow I’d missed that

Anyone mind if I were to merge the threads?

I saw no objections so the threads have been merged.