Medical records

[prestavalve]

Brought to you by the same people who ran part of a pandemic response from an excel spreadsheet.

I don't think there is malevolence here: just plain, straight up dumb.

[Psamathe]

Brought to you by the same people who ran part of a pandemic response from an excel spreadsheet.
.....

That was so out-of-date long recognised and widely known limitations means they gave out the wrong information (significant lower numbers than reality).

Ian

[David2504]

There’s two opt out options. Opt out of GP sharing your data with NHS database. Opt out of NHS sharing your data with outside organisations

https://fullfact.org/health/nhs-data/

The opt-outs are quite complex to understand and NHS Digital's web site is not particularly clear. I opted-out on NHS Digital's web site but all the press reports were saying you have to submit a form to your GP and the NHS Digital opt-out online makes (or made) no reference to the latest schemings.

And impossible to get through to NHS Digital on the phone number they publish along with the opt-out (for opt-out enquiries). And they don't respond to e-mails to the e-mail address they publish on their opt-out page for the purpose of opting-out.

And then you discover there is a Type 1 Opt-out as well and that is a form that out complete, sign and get to your GP except Type-1 opt-outs are being ended and changed to something else ...

You you were designing a system to prevent people using it ... this is what you'd design.

Which all adds to my complete distrust in NHS Digital.

Ian

Opt out ‘1’ prevents your GP sharing data with NHS England. To do that you need to download, print off, complete and return a form to your GP. If you do this though you may have hospital records that bypass your GP and end up in the NHS database.

Opt out ‘2’ prevents NHS sharing your data with others. You can do that online directly via NHS website or via the NHS App, which you may have not least so you have ready access to your covid ‘passport’.

So far I’ve just done opt out ‘2’. Whilst I recognise there is a risk of a data security breach, it’s a risk I’m prepared to take for the sake of the NHS having complete data for their own purposes. Others may be more cautious and wish to exercise opt out ‘1’ as well, or not be bothered and forego both opt outs.

If you don’t exercise your right to opt out ‘1’, current deadline 23rd June, there’s a risk your GP will share your data with the NHS, and once shared cannot be unshared. Any opt out exercised after 23rd June will prevent your GP from sharing any future date with the NHS, but cannot act retrospectively for data already passed to NHS.

[Jdsk]

eOpt out ‘1’ prevents your GP sharing data with NHS England.

NHS Digital... NHS England is a different organisation.

Jonathan

[GayUnicorn]

I'm confused so if you want hospital and NHS to share scans, blood tests- but not sell data to companies, which do you do as done the online one.

[thirdcrank]

I doubt if many people - including some of those responsible - understand the intricacies of the structure of health care.

What's apparently being shown here is that people trust neither the competence of those involved to come up with efficient IT nor their assurances about the confidentiality of the data collection.

[Jdsk]

I'm confused so if you want hospital and NHS to share scans, blood tests- but not sell data to companies, which do you do as done the online one.

This is a very important point.

The short answer is that the project under discussion does not support direct care such as you describe. it is only for "planning and research".

Jonathan

PS: Longer answers are available...

[Mike Sales]

I was a little surprised that my GP and the local hospital where I am being treated could not share my scans and x-rays online.
Different systems apparently!
This proposal to share my records with other bodies seems to show mistaken priorities.

[Jdsk]

I was a little surprised that my GP and the local hospital where I am being treated could not share my scans and x-rays online.
Different systems apparently!

You're not alone.

It isn't only "different systems"... it is technically complex, and there isn't a national programme for implementation.

Failure to communicate in direct care is a major source of inefficiency and adverse incidents.

Jonathan

[Oldjohnw]

Given how difficult potentially it is to move patient records to another health area for legitimate reasons, one does wonder if the NHS computer systems will manage this project anyway. So perhaps there is more likelihood that your records will be lost than sold.

[Psamathe]

I was a little surprised that my GP and the local hospital where I am being treated could not share my scans and x-rays online.
Different systems apparently!

You're not alone.

It isn't only "different systems"... it is technically complex, and there isn't a national programme for implementation.

Failure to communicate in direct care is a major source of inefficiency and adverse incidents.

Jonathan

It's a really bad problem. I had an MRI under NHS and so far 3 different consultants have been unable to get at those scans. They eventually managed to get the "Scan Report" which has invoked "Totally Inadequate" to bad language. One has tried to get clarification through my GP and the direct to the company who the NHS contracted to take the scan but all the GP can get is the inadequate report and the company does not respond. I've been asked to try get get the clarification and tried through PALS and they've tried and got nowhere.

So not just inefficiency but, given my scans were done Nov 2020 (7 months ago) and 2 consultants are still unable to get info from them to help with diagnosis! (3rd consultant decided he could not be bothered to diagnose anyway)

Ian

[simonineaston]

I was chatting to my NHS-IT chums the other day - they 'do' renal clinics - and they were explaining just how difficult it is to share data readily and every time I said something, "Yes but - can't you...?" they gave a me a detailed & plausable explanation as to exactly why and how they couldn't !! The notion of sharing data sounds so easy - such a good idea - but in practice it turns out to be a veritable tower of Babel.

[Mike Sales]

I was chatting to my NHS-IT chums the other day - they 'do' renal clinics - and they were explaining just how difficult it is to share data readily and every time I said something, "Yes but - can't you...?" they gave a me a detailed & plausable explanation as to exactly why and how they couldn't !! The notion of sharing data sounds so easy - such a good idea - but in practice it turns out to be a veritable tower of Babel.

Is it possible to explain in simple terms, comprehensible by a computer ignoramus, why the proposed sharing of medical records with the NHS and pharmaceutical researchers, is possible, but it is impossible fror two of my medical advisers to do the same?

[Jdsk]

Is it possible to explain in simple terms, comprehensible by a computer ignoramus, why the proposed sharing of medical records with the NHS and pharmaceutical researchers, is possible, but it is impossible fror two of my medical advisers to do the same?

1 The data sets are of very different complexity. (Here's an overview of what's in GPDPR: https://digital.nhs.uk/data-and-informa ... -is-shared)

2 The flows are of very different complexity... your direct care might be provided by many practitioners and organisations.

3 It isn't impossible to communicate all or part of the record for direct care... it's difficult, and from what you say no-one has done the hard graft in advance ready for this to support your care when it was needed, see below.

Happy to add details on request.

Jonathan

[Jdsk]

PS: As a rough overview of direct patient care:

There are two flows that do take place routinely across the country: laboratory medicine reports from laboratories to GPs' information systems, and records between GPs information systems when patients move practice.

Beyond that it's mostly determined locally in "county' or similar record sharing projects.

Jonathan