Medical records

[al_yrpal]

Personally I cannot fathom why people are objecting? Presumably your records are anonymous? Presumably the statistics available from collective records will be invaluable to medical research and in time benefit us all? Presumably any fees gathered from users of the data will go to the NHS and benefit us all?

Finally , will it provide a cure for insomnia?

Al

[Jdsk]

I do wonder how many people, like me, wonder "what the hell are you on about?" Online what? NHS records what? Options what?
Never heard of any of it.
A little bit of me wonders what the fuss is about. If you use a service maybe you agree to everything that comes with it. Just a thought.

If you are ill I am wondering what choice you have but to use this particular service.

There might be some confusion between the records used for direct care of patients and this project (GPDPR) which collect records for research and planning and similar.

If there is I'm happy to try and explain.

Jonathan

[Jdsk]

Personally I cannot fathom why people are objecting? Presumably your records are anonymous?

In GPDPR they aren't anonymous.

The first post in this thread includes:
"... the government is grabbing by stealth our identifiable medical records, not just anonymised statistics."

and links to an article which includes:
"What’s worse, your personal information will not be fully anonymous, meaning it is relatively easily identifiable as yours... "

It's simply extraordinary to presume something so important when the facts are so easily available.

Jonathan

[Psamathe]

One aspect is people being open and frank with their treatment provider and not withholding information relevant information they might not want e.g. an insurance provider to know. Or information you don't want passed to who knows where (as "where" is not defined or specified). Reduced confidentiality will sometimes mean people being less forthcoming.

e.g. There are strong indications our health service provision is moving towards a private model with NHS becoming less and less able to be responsive (my own situation I can get a private consultation tomorrow whereas in 2 weeks I'm hitting the 1 year after NHS referral and still no diagnosis/no treatment). So maybe not wise to tell your GP something now that might increase your private insurance premiums when that information gets into the hands of the insurer community?

Ian

[Psamathe]

Another aspect is some conditions have a hereditary/genetic link so information one person gives can also be providing information about others ... And even if the person giving the GP that information has decided to allow it to be passed to 3rd parties, their siblings/children/family members might not yet be having information about risks to their health passed to 3rd parties without their agreement.

Ian

[Jdsk]

One aspect is people being open and frank with their treatment provider and not withholding information relevant information they might not want e.g. an insurance provider to know. Or information you don't want passed to who knows where (as "where" is not defined or specified). Reduced confidentiality will sometimes mean people being less forthcoming.

Yes.

And there was a concrete example in the UK about HIV tests.

Jonathan

[Jdsk]

Another aspect is some conditions have a hereditary/genetic link so information one person gives can also be providing information about others ... And even if the person giving the GP that information has decided to allow it to be passed to 3rd parties, their siblings/children/family members might not yet be having information about risks to their health passed to 3rd parties without their agreement.

Yes, and not only for genetics. Medical records often contain information about other people, and removing that is a large part of what GPs do before transferring records.

IIRC the currently proposed dataset for the GPDPR does not contain information about other people.

Jonathan

[al_yrpal]

Personally I cannot fathom why people are objecting? Presumably your records are anonymous?

In GPDPR they aren't anonymous.

The first post in this thread includes:
"... the government is grabbing by stealth our identifiable medical records, not just anonymised statistics."

and links to an article which includes:
"What’s worse, your personal information will not be fully anonymous, meaning it is relatively easily identifiable as yours... "

It's simply extraordinary to presume something so important when the facts are so easily available.

Jonathan

Its claimed that a few data points can identify a patient, what does that mean? Will insurance companies be poring over patient records in order to spot bad risks?

Al

[Jdsk]

Personally I cannot fathom why people are objecting? Presumably your records are anonymous?

In GPDPR they aren't anonymous.

The first post in this thread includes:
"... the government is grabbing by stealth our identifiable medical records, not just anonymised statistics."

and links to an article which includes:
"What’s worse, your personal information will not be fully anonymous, meaning it is relatively easily identifiable as yours... "

Its claimed that a few data points can identify a patient, what does that mean? Will insurance companies be poring over patient records in order to spot bad risks?

It means that it's possible to identify patients. The data have not been anonymised.

This can be done by NHS Digital.

And it has also been demonstrated many times that even with anonymisation it can be done by anyone with the right data, and that surprisingly little is needed.

Once the information has left NHS Digital any recipient will be bound by any contractual arrangements and by statute law. From what I can tell the lack of clarity over what will actually happen is one of the concerns that people are expressing.

Jonathan

https://digital.nhs.uk/data-and-informa ... d-research
https://www.bma.org.uk/media/4336/bma-r ... july21.pdf
https://medconfidential.org/how-to-opt-out/

[Psamathe]

....
Its claimed that a few data points can identify a patient, what does that mean? Will insurance companies be poring over patient records in order to spot bad risks?

Al

Insurance companies wont have to, pass it to Algo Rythm and go have a cup of coffee and by the time you've drunk the coffee a machine will have made many millions of assumptions and wrong decisions - and you wont even be aware those decisions have even been considered (at least until your next renewal notice where you'll be given some nonsensical justification from a minimum wage overseas call-centre.

As to a few data points providing information it normally means you need surprisingly little information to identify the individual. e.g. If you have my postcode and that I'm male I am uniquely identified (only two bits of information) so e.g. postcode and PSA test result and you can easily find out exactly who I am and that gives vast amounts of additional information.

Ian

[al_yrpal]

Yes but what is the right data? A postcode, sex, knowledge of age, any other known condition a person may have revealed like diabetes? What? How can the snooper be sure? Would it be economical to do this research? Is this a real danger or is this just another highly political bashing exercise on the part of a left wing newspaper?

It would be quite easy to keep data private by witholding postcode for instance

One needs to be more critical and cease swallowing things printed in newspapers as gospel whole.

Al

[Jdsk]

It would be quite easy to keep data private by witholding postcode for instance

Not so much "easy" as "impossible".

As an individual patient you don't have control over which items are extracted.

Jonathan

[Jdsk]

Is this a real danger or is this just another highly political bashing exercise on the part of a left wing newspaper?

Might I suggest reading the linked information.

A lot of people who know a lot about the subject have expressed their concerns. And the proposed start date has now been withdrawn.

Jonathan

[al_yrpal]

Well, as you know you can get your data witheld and I believe that can be retrospective too.

Al

[Jdsk]

There are two levels of opt-out. They are described in the linked articles.

You can't withhold individual data items.

Jonathan