HSCIC / opting out of sharing your medical records

Buick

I only found out about this recently, I don't think it's been very well publicised, and everyone's medical records will be automatically uploaded UNLESS they actively opt out. Some info here:

http://www.pulsetoday.co.uk/home/finance-and-practice-life-news/patient-identifiable-data-to-be-extracted-from-gp-records-in-early-implementer-practices/20003841.article#.Uop0RtK8C9g


I recently wrote to my doctors asking them to add the read codes: 9Nu0 and 9Nu4 to my medical records in order to ensure that information from my medical records is not uploaded to HSCIC and/or any information they have on me does not get passed on to other companies.

Does anyone know how to go about ensuring that data from your hospital records also remains private (ie doesn't get uploaded onto the HSCIC database)?

Moomin21

Can I ask what your concerns are with sharing data? Data is already shared across different care settings, the recent move is more around electronic transfers of data, and there are strict rules in place at HSCIC on how this is done and stored.

All data is held on the Spine, the central NHS 'database', and can be accessed by different systems which have gone through the necessary processes to be able to do this - and they are not easy hoops to jump through!! I know this because it is my job

Buick

If it is your job you are likely to be supportive of it, I understand that

There have been a couple of threads on this subject on MSE, and I get the impression patients are not aware of this. As long as people make an INFORMED choice to remain opted-in, that's fine. My concern is that people do not actually know this is happening, or they do not realise the possible implications of it. Once the data has gone to HSCIC, there is NO WAY of retrieving it back, so if you want to opt out you need to act ASAP.

There are also a number of concerns that people, including GPs, are raising about this, not least issues concerning patient anonymity, which cannot be guaranteed long-term. There are many very valid reasons for opting out, which I personally am trying to do.

Anyway, to get back to my question: How can one make sure that hospital records do not get uploaded onto HSCIC?

Buick

some more information in these links:

https://forums.moneysavingexpert.com/discussion/4815981

http://www.bbc.co.uk/programmes/p01l81g6

keithdc

The alternative view:

http://www.ted.com/talks/john_wilbanks_let_s_pool_our_medical_data.html

The potential social benefits to pooling data far outweigh any disadvantages.

bubblegum6000

I do not work for the NHS but my job does involve offerinv advice on this area.

As far as I am aware there is no option to opt out of the data being uploaded/extracted as it is now a legal requirement under the legislation. However, you can place an objection to the personal information being shared with third parties outside the NHS.

Ultimately if the information is anonymous and therefore not identifiable it wouldnt be considered personal information and you cannot therefore object.

However, you can place the same objection on any care records such as hospital.

BarneyRubble

If the state pays for your medical care, then surely the state can do what it wants with the data?

We are talking anonymous statistical data to help with studies or service planning aren't we? Hardly 'Big Brother' and hugely beneficial to everybody who will use services in the future.

If you don't like it, then opt out and pay for your care yourself. But don't use an insurance company - or they'll use the data. As will a credit card company if you pay that way.

So best thing is just to have a shoebox full of cash ready for all your medical needs.

terra_ferma

I'd like to add a bit of information to this debate.
UK data is covered by the Data Protection Act.
However UK data hosted in other countries, including USA, is not covered. Once your data leaves the UK./EU (for example if the company uses cloud hosting this is likely to be the case) then it's not protected. This means that the government of that country has free access without having to follow their own data protection procedures.
Many Data Protection procedures would have a disclaimer about information not being protected if it's held outside the EU.

I don't know if this particular system uses foreign hosting (including cloud hosting, Dropbox, Google services etc etc), I haven't looked into it yet, but nowadays most companies/public organisations do in one way or another.

Some people won't be bothered, some people will be, it's up to them.

j.e.j.

Don't know much about it, but if they've got nothing to hide, why are they hiding this information from people?

keithdc

j.e.j. wrote: »

Don't know much about it, but if they've got nothing to hide, why are they hiding this information from people?

Because it's a non-issue, unless you are a conspiracy theorist!

j.e.j.

nope, not got a tin-foil hat :rotfl:
I just happen to take patient confidentiality very seriously, as I'd have hoped (naively?) our government and the NHS might do, too.

A few years ago we were given the option and the information to opt out of something called Summary Care Records. I didn't opt out, but at least they had the courtesy to inform us. It's the first I've heard about this HSCIC thing, and I've not heard anyone else mentioning it.

If it was a 'non-issue' I doubt they'd have been discussing it on radio 4. I'm off to have a listen to that link