NHS & Care data scheme

[RichJay 10]

Sorry , I know this is already being covered in another thread but felt it needed raising again - do you realise that unless you opt out of the care.data scheme by the end of March , ALL of your electronic GP records will automatically be extracted and loaded onto a huge database called the Health and Social Care Information Centre , a repository based in Leeds .

 

Your GP has no control over this extraction of data and , thanks to the Health and Social Care Act 2012 ( aka privatisation of the NHS ) is powerless to prevent it .

 

This data will not be used to improve your care as a patient , and you will not be anonymous as your date of birth , NHS number , gender and full postcode will be on your details . See medConfidential website for opt-out leaflets . I certainly , despite having nothing in my medical records to hide , do not want my data shared .

 

When the NHS has been privatised and we all have to consider taking out private healthcare , how comfortable will it feel knowing that private health insurance companies know everything about us , and could deny cover for just about anything ?

 

Similar data from visits to A&E and admissions to hospital are already being used in many research projects with the aim of improving patient care. The vast majority of users of the data won't get to see your NHS number, date of birth or full postcode because these are only being used by the Health and Social Care Information Centre to link records before they are pseudonymised. Those who need access to full records (for example in a clinical trial) will need patient consent before it is given to them.

[I1L2T3 10]

Having your medical data centralised to make it accessible to the NHS wherever you rock up (at hospital for example) is 'utterly chilling' to you?

 

I have opted out, but primarily down to data security concerns and having worked on the spine project.

 

---------- Post added 03-02-2014 at 07:33 ----------

 

 

The government actually strictly limits information exchange between departments. It's not a free for all for department X and Y to pool their knowledge on you.

 

---------- Post added 03-02-2014 at 07:34 ----------

 

 

If I arrive unconscious in an ambulance in Nottinghamshire, I have nothing to hide from the Drs in my medical records. In fact, I'd be quite happy for them to have access.

That can't happen if the records are on paper somewhere in Sheffield! Or even stored on a single NHS trust computer system in Sheffield.

 

This is not a centralised patient record for access by medical professionals.

 

Go away and read up on that point. Come back and we'll discuss.

 

Thanks.

[Xt500 10]

I've said it before and no one answered. Can someone who objects give me a specific example of "something bad" that could happen as a result of this?

 

 

Posted from Sheffieldforum.co.uk App for Android

 

Who knows? And thats what worries people!!

[Cyclone 10]

This is not a centralised patient record for access by medical professionals.

 

Go away and read up on that point. Come back and we'll discuss.

 

Thanks.

 

Happy to read more about it, this thread seems to have been merged with another since I commented this morning. Unless I missed them, this morning there were no links to any further information and the whole thing was a bit vague.

 

Interesting. I can see the underlying point of aggregated data being made available, but I think I'll be opting out of this, I can't see any good reason why identifiable patient records should be made available outside a clinical setting.

 

---------- Post added 03-02-2014 at 10:47 ----------

 

I've said it before and no one answered. Can someone who objects give me a specific example of "something bad" that could happen as a result of this?

 

 

Posted from Sheffieldforum.co.uk App for Android

 

Boopa could get hold of the records and refuse you personal medical care or insurance.

Other organisations could get hold of it and apply targeted selling techniques to you.

If the data leaks further than that, then someone unscrupulous could attempt to blackmail you regarding your medical history.

Edited February 3, 2014 by Cyclone

[Moosey 10]

Boopa could get hold of the records and refuse you personal medical care or insurance.

Other organisations could get hold of it and apply targeted selling techniques to you.

If the data leaks further than that, then someone unscrupulous could attempt to blackmail you regarding your medical history.

 

Take out BUPA and see what happens if you fail to disclose a previous condition and then claim. Just the same as if you fail to tell your insurers something. This is info they're entitled to and if you withhold it you won't recover your money. Nothing new there.

 

Who is going to blackmail someone about their medical history and why? Such people would get that information whether the records were kept in this way or not. Blackmail fans would find a way if they were determined.

 

 

 

Posted from Sheffieldforum.co.uk App for Android

[onewheeldave 22]

Why is it chilling? Somebody explain clearly how it's bad. It's nothing to do with insurance companies, they can only get your data with your consent, as they can now. It's about drug research & finding ways the nhs could improve it's service.

 

The details for who can use the data are here: http://www.hscic.gov.uk/dlesaac http://www.hscic.gov.uk/dles

 

It's chilling because the people running this have not included an opt-out form with the info leaflet- very underhand, and, a clear indication that there's something dodgy about this.

 

And, private companies can access the data.

 

Also, a point not yet been raised- given the typical ineptitude of companies in charge of data and the frequent mistakes, can we be sure that even if we opt-out, and the 2 necessary codes are placed on our records, that they won't be uploaded anyway?

 

If this was about imroving the NHS, all that's necessary is a leaflet to all patients explaining the benefits, with a form so the ones who believe it, can opt-in.

 

That really is the key to engendering trust- opt-in forms.

 

An opt-out form is an inferior option, but would be far better than the current 'no form whatsever for opt-in/opt-out.

 

---------- Post added 03-02-2014 at 12:08 ----------

 

Having your medical data centralised to make it accessible to the NHS wherever you rock up (at hospital for example) is 'utterly chilling' to you?

 

I have opted out, but primarily down to data security concerns and having worked on the spine project.

 

---------- Post added 03-02-2014 at 07:33 ----------

 

 

The government actually strictly limits information exchange between departments. It's not a free for all for department X and Y to pool their knowledge on you.

 

---------- Post added 03-02-2014 at 07:34 ----------

 

 

If I arrive unconscious in an ambulance in Nottinghamshire, I have nothing to hide from the Drs in my medical records. In fact, I'd be quite happy for them to have access.

That can't happen if the records are on paper somewhere in Sheffield! Or even stored on a single NHS trust computer system in Sheffield.

 

Bizarre that you're defending this, yet have opted out yourself due to data security concerns

 

---------- Post added 03-02-2014 at 12:10 ----------

 

I've said it before and no one answered. Can someone who objects give me a specific example of "something bad" that could happen as a result of this?

 

 

Posted from Sheffieldforum.co.uk App for Android

 

My private medical data will be accessible by individuals and companies who currently cannot read it.

 

---------- Post added 03-02-2014 at 12:22 ----------

 

Here's an article on how 41% of GPs are opting out-

 

http://www.pulsetoday.co.uk/your-practice/practice-topics/it/over-40-of-gps-intend-to-opt-themselves-out-of-caredata-scheme/20005648.article

 

Here's a quote from a GP on that page-

 

 

Dr Marie-Louise Tidmarsh, a GP in Horsley Woodhouse, Derbyshire, said that she would be opting out as her details could easily identify her to her neighbours.

 

She said: ‘I think patients have been misled about the “confidential” nature of the data extractions, and it is not clear to whom the data may be sold.’

 

 

as none of the info leaflets being sent out will contain an opt-out form, here's a link to a page where one can be downloaded and printed off-

 

http://medconfidential.org/how-to-opt-out/#download

 

The more people opt out of this, the more we send a message to the authorities that-

 

1. we do not trust them to respect our private data

2. we deeply resent the fact that their info leaflets do not come with an opt-out form

3. we will happily defend our absolute right to determine who sees our private medical data and will do our best to scupper this, and any other similar schemes in future, unless they pay us the basic respect of being able to opt-out easily by filling in an attached opt-out form.

 

They're taking the p*ss with this- let's all send a message by opting-out.

[I1L2T3 10]

Take out BUPA and see what happens if you fail to disclose a previous condition and then claim. Just the same as if you fail to tell your insurers something. This is info they're entitled to and if you withhold it you won't recover your money. Nothing new there.

 

Who is going to blackmail someone about their medical history and why? Such people would get that information whether the records were kept in this way or not. Blackmail fans would find a way if they were determined.

 

 

 

Posted from Sheffieldforum.co.uk App for Android

 

Currently you have to give explicit permission on a case by case basis to your medical records. With care.data any organisation can apply to obtain your record. You won't know who has your data. You won't know what it is being used for.

 

It could be easily used against your best interests. I think you're a bit naive about insurance companies - you do realise how nasty things can get over even the most basic technicalities? How hard they will work to avoid meeting claims?

 

Just look across to the USA for the answer. Then take a look at this database and realise that it could be used to underpin the activities of medical insurance companies once the NHS is privatised. And you're paying for it. With your taxes.

[RichJay 10]

Currently you have to give explicit permission on a case by case basis to your medical records. With care.data any organisation can apply to obtain your record. You won't know who has your data. You won't know what it is being used for.

 

You will still need to give explicit permission on a case by case basis to see identifiable information. The Health and Social Care Information Centre will also not be sharing information about you with insurance companies or solicitors.

 

This document explains all of this and I've copied some relevant paragraphs:

 

http://www.england.nhs.uk/wp-content/uploads/2014/01/cd-patient-faqs.pdf

 

Potentially identifiable information: this is information about individual

patients but it does not include any identifiers (i.e. there are no personal details such as your date of birth and postcode included). We would never publish this type of information because there is a risk that you might be identified. For example, if you were the only person in an area who had a rare disease then someone may work out that it was you even though your

identifiers were not included. As a result, there are strict controls about how we release potentially identifiable information. For example, we would only ever release this type of information to approved organisations for approved purposes, and there must be a legal contract in place with penalties for any misuse of the information.

 

Identifiable information: information that identifies you can only be

disclosed where you have given your explicit consent (such as where you have agreed to participate in a research study) or there is a legal basis for doing so

 

The Health and Social Care Information Centre will not share information about you with insurance companies or solicitors. If an insurance company or solicitor wanted in formation about you, they would need to

approach your GP practice directly and you would need to give your explicit consent before any of your information could be shared with them.

If you do not agree to their specific request for your information then it will not be shared with them.

[Moosey 10]

Currently you have to give explicit permission on a case by case basis to your medical records. With care.data any organisation can apply to obtain your record. You won't know who has your data. You won't know what it is being used for.

 

It could be easily used against your best interests. I think you're a bit naive about insurance companies - you do realise how nasty things can get over even the most basic technicalities? How hard they will work to avoid meeting claims?

 

Just look across to the USA for the answer. Then take a look at this database and realise that it could be used to underpin the activities of medical insurance companies once the NHS is privatised. And you're paying for it. With your taxes.

 

 

You try going to BUPA, taking out a policy, and refusing access to your records and let me know how you get on when you make a claim.

 

I'm not naive in terms of insurers at all - I work with them on a daily basis and have done for nearly 20 years. I know every trick they try, and you're right, they will get out of paying any way they can. Hence, I can completely assure you that if you have a BUPA policy, refuse your records, and then make a claim, they will evade paying on policy non-compliance, or, if there's something in your records that's relevant, on the basis of failure to disclose at inception.

 

I don't see how this new policy makes things different. If the information is there, they will find it. If you refuse to opt in, on the basis that you have a heart condition, and you think it'll affect your premium, at best, your premiums without that info will be sky high (would you indemnify someone you didn't know everything about?) but at worst, when you have that heart attack, they will find out, as they're then entitled to your records anyway, and will refuse payment, meaning you've been paying premiums for nothing. Honesty upfront is the best policy.

 

Do people actually believe that the Data Protection Act that we currently have has any teeth whatsoever? If so, I'm afraid that's very naive.

 

I've explained before, I could quite easily get vast amounts of information about someone on the basis that it's linked to a claim I'm dealing with. S35(2) of the act. I've had people's pension info, school records, medical records, bank statements - all without their consent, and even without their knowledge, all supported by a Court and a ten minute hearing (at most - often without a hearing).

 

---------- Post added 03-02-2014 at 13:34 ----------

 

My private medical data will be accessible by individuals and companies who currently cannot read it.

 

I assure you those with an interest already can read it, if it's important or relevant.

Edited February 3, 2014 by Moosey

[L00b 441]

You will still need to give explicit permission on a case by case basis to see identifiable information. The Health and Social Care Information Centre will also not be sharing information about you with insurance companies or solicitors.

Until and unless an HSCIC exec with a full copy of the DB on their laptop HDD "forgets" the said laptop on a train/plane/motorway service/<etc.>

 

But of course, this never happens...oh wait

[Moosey 10]

It's chilling because the people running this have not included an opt-out form with the info leaflet- very underhand, and, a clear indication that there's something dodgy about this.

 

Or, conversley, a clear indication that they can't see (and didn't expect) any fuss about this?

 

Don't always assume the worst.

 

---------- Post added 03-02-2014 at 13:36 ----------

 

Until and unless an HSCIC exec with a full copy of the DB on their laptop HDD "forgets" the said laptop on a train/plane/motorway service/<etc.>

 

But of course, this won't happen...oh wait

 

That's a more valid concern, however people don't seem to realise just how often their medical records, for example, are flying around in Royal Mail, unrecorded, and how often Royal Mail "lose" things!

[L00b 441]

That's a more valid concern, however people don't seem to realise just how often their medical records, for example, are flying around in Royal Mail, unrecorded, and how often Royal Mail "lose" things!

I am all too aware of this

 

And, as alluded to by my quote marks, there's forgetting and "forgetting" (with the latter a rare condition, known to be prompted by the surreptitious passing of particularly well-padded envelopes )