Have you heard about care.data?

[Meldrew]

An article in PC Pro magazine brought this to my attention. Details are in the link below, created by a GP. As I read it, all of our medical data is just about to be harvested up by an organisation (HSCIC) purely so this data can be sold to other organisations. This data will be transferred from GP practices and hospitals and will be updated monthly.

 

They say that the data is anonymised, but not that much by the looks of it – much can be tracked back to individuals without too much bother. This data could quite easily be obtained by insurance companies, mortgage providers, etc with quite worrying consequences and that’s probably just the tip of the iceberg.

 

Please do make your own minds up. For lots more info, visit: care.data - the brief version

 

You can opt out, but it needs to be done quite quickly. The process is due to start in Autumn and once data has been sent to HSCIC, you cannot ask them to remove it, just can just opt out of the monthly update process. I know I’m going to opt-opt out ASAP and write to my MP too.

 

Meldrew

[Domino]

If they hadn't opened it up to third party organisations this could have been fantastic for medical researchers....le sigh

[CAM]

Cheers, printed mine and dropping it off later today.

[MatthewL]

I would recommend you think twice about this, it could affect your care if you was admitted to hospital in an emergency situation and you were unable to provide any history of illness or medication you were on.

 

Information is anonomised and the your name and address doesn't go with it, its all on your NHS number, also worth checking out the SCR website.

 

If you want to still opt out I suggest you speak to your practice manager at your local practice or if you are still unhappy speak to your local CCG.

 

Those of you who don't see a GP very often will have a very empty record and will benefit those with complex and ongoing issues.

[siuko]

If you read the care.data - the brief version website it mentions this -

 

Medical staff treating you in GP surgeries, hospitals, A&E, pharmacies, NHS 111 call centres and GP out-of-hours centres will not use, or be able to use, this database.

 

Now if that is correct then opting out will not affect your normal treatment

 

I'm going to opt-out mainly because I just don't like the way they do these things - make it opt-in would be fine.

Edited August 19, 2014 by siuko

[Meldrew]

Yep, this is nothing to do with general day to day data sharing between hospitals, GPs, etc. The opt-out form for example states that this will not affect your medical care in any way.

 

Quote from the form:

"This programme is called care.data, and the information uploaded will be used for purposes other than your direct medical care (so-called “secondary uses”).

Medical staff treating you in GP surgeries, hospitals, A&E and out-of-hours centres will not use, or be able to use, this database. However, the uploaded data is likely to be made available to organisations outside of the NHS, such as universities and commercial organisations."

 

Also:

 

""This is not the Summary Care Record. The two databases are very different. Opting out of one database does not mean that you have automatically opted out of the other."

Edited August 19, 2014 by Meldrew

[d0pefish]

The cynic in me thinks it doesn't really matter if you opt-out. It'll still happen, you'll just find out about it from another wikileaks reveal or something.

[AMLinington]

An article in PC Pro magazine brought this to my attention. Details are in the link below, created by a GP. As I read it, all of our medical data is just about to be harvested up by an organisation (HSCIC) purely so this data can be sold to other organisations. This data will be transferred from GP practices and hospitals and will be updated monthly.

 

They say that the data is anonymised, but not that much by the looks of it – much can be tracked back to individuals without too much bother. This data could quite easily be obtained by insurance companies, mortgage providers, etc with quite worrying consequences and that’s probably just the tip of the iceberg.

 

Please do make your own minds up. For lots more info, visit: care.data - the brief version

 

You can opt out, but it needs to be done quite quickly. The process is due to start in Autumn and once data has been sent to HSCIC, you cannot ask them to remove it, just can just opt out of the monthly update process. I know I’m going to opt-opt out ASAP and write to my MP too.

 

Meldrew

 

I knew about the Summary Care record but not this! I'm appalled. Thanks for the heads up.

[CAM]

Phoned my GP yesterday and got the whole family opted out. They didn't know it by the care.data name but did recognised HSCIC.

[rich_tech]

Anyone got a reliable link to how it is regards Wales, I know it mentions England alone? I cannot see anything mentioned on there and google seems to be keeping in the dark about it.

[sonofsanta]

Why can you never have it removed? Doesn't that breach DPA, or have they written a specific exception for these clowns?

 

Will opt the family out now though, cheers for the heads up.

[Meldrew]

Why can you never have it removed? Doesn't that breach DPA, or have they written a specific exception for these clowns?

 

Will opt the family out now though, cheers for the heads up.

 

Reading the info, it seems the data has been classified as not applicable to DPA as its has been anonymsed, except its not been done very well so can be linked back to individuals. Sounds thoroughly dodgy to me.

 

Meldrew

[JJonas]

Phoned my GP yesterday and got the whole family opted out. They didn't know it by the care.data name but did recognised HSCIC.

 

I think this is something you have to do in person as they need to verify that it is you asking to be opted out.

[Arthur]

You can opt out, but it needs to be done quite quickly.

If you opted-out earlier this year, do you need to do it again?

 

I opted out after reading this thread...

 

www.edugeek.net/forums/general-chat/130959-your-medical-secrets.html

Edited August 20, 2014 by Arthur

[bobt]

Whole family opted-out over the phone! Done.

[AMLinington]

I phoned my GP to opt out and they hung up on me! lol. I'll be dropping the opt out form off in the next few days.

[tommej]

Good website with a lot more info about this here: care.data

 

Personally I don't think it's actually such a bad thing, aside from the privacy concerns.

Edited August 21, 2014 by tommej

[Arthur]

NHS details released against patients' wishes, admits data body

 

The body responsible responsible for releasing NHS patient data to organisations including insurance companies has admitted information about patients has been shared against their wishes, it has emerged.

 

Requests by up to 700,000 patients for details from their records not to be passed on, registered during preparations for the creation of a giant medical database, have not been met.

 

But the Health and Social Care Information Centre (HSCIC) told MPs that it “does not currently have the resources or processes to handle such a significant level of objection” and it also encountered technical issues over logging the preferences.

 

Patients registered their objections during the development of the controversial care data system but the plans were shelved in March 2014.

 

The admission was made in a letter to the House of Commons health select committee in February from HSCIC chair Kingsley Manning, who admitted it “may take some time” to resolve the issue.

[Garacesh]

The cynic in me thinks it doesn't really matter if you opt-out. It'll still happen, you'll just find out about it from another wikileaks reveal or something.

 

NHS details released against patients' wishes, admits data body

@d0pefish called it.

[rich_tech]

Thats the worrying thing about "Big Data" these days, opting out is no guarantee of anything not being sent anyway, its easier and cheap to apologise after to the tiny individuals from these corporation's viewpoints.

 

I have had a bit of a set too with my Housing Association as they seem to have jumped into bed with Experian now and start dumping all our payment and account data to them, under the guise of helping tenant's get credit more easily. I have no wish for anything to get shared with that firm without my thorough consent, given the issues people have had and what I have read.

[Miscbrah]

Thanks op, printing form now.

[Garacesh]

Little bit too late, @miscbrah (WHY ARE YOU NOT TAGGABLE? WHAT IS THIS SORCERY?!)

 

 

Apparently you can opt out of further updates to your record, but you can't expunge what's already been shared. How that's not a humongous violation of the DPA I don't know..

[Miscbrah]

Ah toilet, now the data-mining overlords know about my hayfever.

[AMLinington]

I opted out but I wouldn't be surprised to find I'm one of the ones that was 'ignored' - the whole process was poorly thought out - I mean the HCIC themselves have said they don't have resources to cope with the unprecedented level of objection - surely that tells you something? Surely it means that the whole plan in the first place was not thought out or researched properly?

 

What annoys me the most about it is how little access or control we have to the data. We can't stop third parties getting hold of our data and that's the worst bit. I know many people are against the ID card idea but I think it would be good to have all our data held on databases that can only be accessed by the ID cards (let's assume for the moment that cards can't be read or cloned without a specific scanner being in actual contact with the card, and that the use of the card is authorised by a fingerprint scan or other biometric to prevent use of stolen cards - any solution will never be 100% abuse proof but we can make it as hard as possible). So you need access to emergency medical care - you go to hospital who then use your card to access your medical record and give you the right care taking into account your individual needs. The ID card could hold details of your driving licence and passport. It could hold information about donor wishes, next of kin contact information, Medical alerts etc.

 

You'll never get away from 'The Government' having your private details, but if YOU are in control of gaining access to them then YOU decide how you want them used. It would require stringent policies to be put into place to prevent misuse but it could be a powerful tool. I know I'd rather carry around my medical record than have it sat in some money-for-access database somewhere being used for unknown purposes.

[Arthur]

Boots, Tesco and Superdrug to get access to NHS medical records

 

High street pharmacies such as Boots, Tesco and Superdrug will be given access to NHS medical records, under a national scheme which privacy campaigners fear could expose patients to “hard sell” tactics.

 

Health officials have drawn up plans to send sensitive data from GP surgeries to pharmacies across the country, starting this autumn, without considering the views of patients.

 

NHS England says the scheme will ease pressures on family doctors, and improve the care given to patients in the High Street.

 

But campaigners fear major commercial chains will be able to exploit the valuable data, and use it to push the sales of their products.

 

Officials have now ordered the national rollout of the scheme, on the basis of an evaluation of pilots in 140 pharmacies which they say showed “significant benefits”.