NHS Care Data

Peddle Up!

NHS Care Data

In, or out?

schlepcycling

Out.

wishitwasallflat

In - who gives a .... ! My life is so boring no one would want to know about it anyway.

BillyMansell

Out, but even if you opt out they're trying to include a clause that would allow them to use your data and that's after it's all been criticised for not providing clear information. Completely untrustworthy.

markhewitt1978

In. If it helps then why not. I'm not that paranoid I have to keep out of everything.

mr_goo

This data sharing is not well explained, as one can obviously imagine. My wife is managing this data sharing program at her medical centre for over 10,000 patients. I am told there are various systems employed on the medical data sharing. There are quite a few opt In/Outs

There is a system where data is shared within your own area or primary care trust, so that should you end up in a local hospital they can immediately gain access to your medical records without having to request - this is obviously a good thing.

Another is a national data base. Again should you have an accident or need to seek medical support anywhere in the UK, your records are accessible. This to me does seem like a good thing.

However the one you need to look into is HSCIC. This I am told may enable your records to fall into the hands of non NHS establishments and possibly commercial entities ie pharmaceutical companies.

There are leaflets supposedly being sent out to all. I am not even sure if non responders are automatically deemed to be opt IN. So everyone does need to attend to this especially the HSCIC.

If I find anything else out from her indoors I shall post.

BillyMansell

Pretty much spot on Mr Goo although the PCTs are now the CCGs (Clinical Commissioning Groups), one of the main differences being they had to divest themselves of providing community services to focus on commissioning.

I refer people to this website set up by a GP concerned by the lack of honest information. People's own GP practices may have set up their own information page.

BTW, I never did receive a copy of the care.data leaflet. One of my areas of work is in challenging health and social care to properly consult with the public as they often set the bar for what is acceptable consultation very low for themselves. That I'm not alone in not receiving the leaflet rings alarm bells for me that they've aspired to do the absolute minimum in engaging with the public on this and that they've now delayed it's implementation for six months rather confirms this.

rolf_f

I'm in favour of medicine and being mended when I'm ill so I'm in. Has been badly handled though.

BillyMansell

Rolf F wrote:

I'm in favour of medicine and being mended when I'm ill so I'm in. Has been badly handled though.

Except Rolf this serves no purpose for your direct medical care as GPs and hospitals can already share that information, or from another perspective written on the website,"GPs, hospital doctors, nurses, physiotherapists, pharmacists and all the other clinical staff involved in providing your direct medical care will not have access".

Come Release 2 you as an individual will be identifiable to any organisation who wants to buy information about your medical history which could be a bank you're applying for a mortgage or loan from or an insurance company with direct interest or on behalf of an employer.

mr_goo

The NHS Data sharing really stinks of a back door method of ID cards, especially the HSCIC element. This data is going to be available to any organisation willing to pay for it, ie banks, insurers etc. Therefore it could also be implied that the info will be shared with government agencies from other countries, whereby UK citizens could find themselves under scrutiny prior to travel or crossing borders.

I am all for medical data sharing where it will benefit patients when sourcing info on medical history is paramount to their well being. But the wholesale selling of medical data is ethically wrong, and I am very surprised that this has not been discussed in Parliament.

rolf_f

BillyMansell wrote:

Rolf F wrote:

I'm in favour of medicine and being mended when I'm ill so I'm in. Has been badly handled though.

Except Rolf this serves no purpose for your direct medical care as GPs and hospitals can already share that information, or from another perspective written on the website,"GPs, hospital doctors, nurses, physiotherapists, pharmacists and all the other clinical staff involved in providing your direct medical care will not have access".

Come Release 2 you as an individual will be identifiable to any organisation who wants to buy information about your medical history which could be a bank you're applying for a mortgage or loan from or an insurance company with direct interest or on behalf of an employer.

Where's the evidence? A link would be good (and not to anything on the Daily Mail!). Not interested in paranoid conspiracy theory stuff. What I am interested in is large scale data sets being used to save lives. This will help. Note - GPs and hospitals can share data but they don't actually seem to - and not in a way that is manageable for large scale research datasets. Hosptials don't even seem to keep data for more than 7 years and they don't as a matter of course provide their data to the GPs. So it gets lost.

BillyMansell

Rolf F wrote:

BillyMansell wrote:

Rolf F wrote:

I'm in favour of medicine and being mended when I'm ill so I'm in. Has been badly handled though.

Except Rolf this serves no purpose for your direct medical care as GPs and hospitals can already share that information, or from another perspective written on the website,"GPs, hospital doctors, nurses, physiotherapists, pharmacists and all the other clinical staff involved in providing your direct medical care will not have access".

Come Release 2 you as an individual will be identifiable to any organisation who wants to buy information about your medical history which could be a bank you're applying for a mortgage or loan from or an insurance company with direct interest or on behalf of an employer.

Where's the evidence? A link would be good (and not to anything on the Daily Mail!). Not interested in paranoid conspiracy theory stuff. What I am interested in is large scale data sets being used to save lives. This will help. Note - GPs and hospitals can share data but they don't actually seem to - and not in a way that is manageable for large scale research datasets. Hosptials don't even seem to keep data for more than 7 years and they don't as a matter of course provide their data to the GPs. So it gets lost.

Similarly, where's your evidence that this is about collecting large scale data sets to be used to save lives. Maybe' the conspiracy theory is that this somehow isn't already happening and you've fallen for it except NIHR, MHRN and CLAHRC are just three organisations that come to mind who are already involved in healthcare and portfolio research through the collection of large data sets.

markhewitt1978

Isn't the main issue now that it doesn't matter what the government says about not sharing data, we've been lied to so many times we just don't believe anything they say. So they say they won't sell information, then 2 years down the line they change the law then you wonder why you're getting targeted ads about your latest illness on facebook.

Peddle Up!

Mr Goo wrote:

The NHS Data sharing really stinks of a back door method of ID cards, especially the HSCIC element. This data is going to be available to any organisation willing to pay for it, ie banks, insurers etc. Therefore it could also be implied that the info will be shared with government agencies from other countries, whereby UK citizens could find themselves under scrutiny prior to travel or crossing borders.

I am all for medical data sharing where it will benefit patients when sourcing info on medical history is paramount to their well being. But the wholesale selling of medical data is ethically wrong, and I am very surprised that this has not been discussed in Parliament.

Pretty much my take on it. I remember being asked by DVLA to give my permission for details to be stored for the purposes of collecting the duty and assisting the police. Two minutes later they're selling it to anyone who pays them. :roll:

mr_goo

Below is the link to rules on NHS data sharing. If you read this it may become apparent to you that your info could be used by non medical organisations.
One of the purposes of this shared info is to help with strategic planning of NHS resources. GOOD. However there is a bit that states that you as a patient are 'potentially identifiable'. NOT GOOD.

http://www.hscic.gov.uk/article/3399/Rules-for-sharing-information

rolf_f

Mr Goo wrote:

Below is the link to rules on NHS data sharing. If you read this it may become apparent to you that your info could be used by non medical organisations.
One of the purposes of this shared info is to help with strategic planning of NHS resources. GOOD. However there is a bit that states that you as a patient are 'potentially identifiable'. NOT GOOD.

http://www.hscic.gov.uk/article/3399/Rules-for-sharing-information

Eg this?

Evil NHS wrote:

We sometimes provide information under strict controls where key 'identifiers' (like name, address, NHS number, and postcode etc.) are removed, but there is still a very slight risk that patients might be identified, for example if a patient was the only person in an area who had a rare disease then someone may work out that it was this person even though no identifiers were included

I'm not losing any sleep over that.

BillyMansell wrote:

Similarly, where's your evidence that this is about collecting large scale data sets to be used to save lives. Maybe' the conspiracy theory is that this somehow isn't already happening and you've fallen for it except NIHR, MHRN and CLAHRC are just three organisations that come to mind who are already involved in healthcare and portfolio research through the collection of large data sets.

So you can't supply any evidence? I asked for some evidence (you hadn't - so I didn't give any) and rather than provide the link and also ask me for evidence to support my viewpoint, you just throw it back at me. :roll:

Various references in the document below and actual details of research projects linked to in point 21 in the FAQ below that is linked to in the page that the OP posted.
http://www.nhs.uk/NHSEngland/thenhs/rec ... 022014.pdf

BillyMansell

Rolf F wrote:

BillyMansell wrote:

Similarly, where's your evidence that this is about collecting large scale data sets to be used to save lives. Maybe' the conspiracy theory is that this somehow isn't already happening and you've fallen for it except NIHR, MHRN and CLAHRC are just three organisations that come to mind who are already involved in healthcare and portfolio research through the collection of large data sets.

So you can't supply any evidence? I asked for some evidence (you hadn't - so I didn't give any) and rather than provide the link and also ask me for evidence to support my viewpoint, you just throw it back at me. :roll:

I provided a link that you chose to ignore which is very telling.

That you're clearly getting upset about this is also very telling.

mr_goo

Rolf

Billy and I have merely pointed out to you some info that you may wish to consider. Whether you take in and digest is clearly up to you.

Paulie W

I think this process could have clear benefits - the creation of large data sets is potentially of great value to researchers who struggle to get this kind or at leats scale of data in the current system.

The problem is the pseudoanonymised data. It's pretty clear from the HSCIC's own documentation that some of this data will be provided to e.g. insurance companies during the second release. It's the linking up of existing data sets with this 'amber data' which will enable identification of individuals. That to me is a problem and most NHS Research Ethics Committees would have a problem with any data collected that fell into such a category so it's interesting that this is being seen as a marginal issue in this context.

sungod

in, right up to the elbow, net benefits to humanity could be significant

anyone concerned about being identified, analysed and tracked had better stop using the internet, mobile phone, loyalty cards, mail order, bank account, home shopping etc.

i've seen no evidence that individuals' data will be sold to insurance companies, perhaps data on outcomes could be, but they get that from published research, private health insurers get plenty of data direct anyway

the significant issue is poor data protection in our society: there are plenty of organizations happily collecting and selling each other data on us, with no significant penalty for misuse or improper disclosure - 'significant' would be jail terms for the senior management together with deletion of every database that had at least one element misused, that's a penalty, not trivial fines

there's no way to 'claim back' all the data that's recorded, you even have to pay to find out what they have on you, with no way to know if the response is complete

the nhs is last thing i'd worry about

markhewitt1978

sungod wrote:

i've seen no evidence that individuals' data will be sold to insurance companies, perhaps data on outcomes could be, but they get that from published research, private health insurers get plenty of data direct anyway

But the main worry is that governments lie about this. They get made an offer and see the money involved and they start selling. Just like the DVLA sell car details to anyone who asks.

Paulie W

sungod wrote:

in, right up to the elbow, net benefits to humanity could be significant

anyone concerned about being identified, analysed and tracked had better stop using the internet, mobile phone, loyalty cards, mail order, bank account, home shopping etc.

i've seen no evidence that individuals' data will be sold to insurance companies, perhaps data on outcomes could be, but they get that from published research, private health insurers get plenty of data direct anyway

I'm in too but only because I know what it's all about and have made an informed decision about the overall benefits - not many are currently in that position.

Your point about being identfied via the web is hardly relevant because the nature of the data in these records is fundamentally different.

The HSCIC's own information identifies insurance companies as potential data recipients.

BillyMansell

sungod wrote:

anyone concerned about being identified, analysed and tracked had better stop using the internet, mobile phone, loyalty cards, mail order, bank account, home shopping etc.

The old 'if you've nothing to hide you've nothing to fear' adage is a bit 1990''s and I should hope has been discredited but now it appears 'it's for your own good' is the cry, but that along with forcible collection of data questions how empowering this is for people, empowering being a word used by some proponents. As someone who leads on public engagement in health and social care it's not my idea of public and patient empowerment.

i've seen no evidence that individuals' data will be sold to insurance companies, perhaps data on outcomes could be, but they get that from published research, private health insurers get plenty of data direct anyway

From my previous link, here's the price list and contained here is the statement that HSCIC will give pseudonymised data to what are loosely referred to as 'other recipients' within which HSCIC have identified insurers. Of course, people will still argue this isn't the same as selling individual data but we've already seen huge mission creep in the Patient Data Bill.

the significant issue is poor data protection in our society: there are plenty of organizations happily collecting and selling each other data on us, with no significant penalty for misuse or improper disclosure - 'significant' would be jail terms for the senior management together with deletion of every database that had at least one element misused, that's a penalty, not trivial fines

Indeed, and when we already have examples like the ICO and TPS who do little to protect the consumer then what hope is there in any new system that forcibly takes our data and sells it on, even if on a cost-neutral basis, won't abuse the powers they've been given.

mr_goo

For those who are going in 'elbow deep' and all for this data collection of medical info. Think of this scenario.
You apply for a job you really really want. You pass muster with all the references, tests, etc etc. Yet you are turned down. Simply because the HR department are informed by company insurers that your past medical history could be a liability. I do understand that a medical form has to be submitted. But say if as a young adult you had some counselling or minor condition and that is all behind you. This could be used against you in the future.

BelgianBeerGeek

Mr Goo wrote:

For those who are going in 'elbow deep' and all for this data collection of medical info. Think of this scenario.
You apply for a job you really really want. You pass muster with all the references, tests, etc etc. Yet you are turned down. Simply because the HR department are informed by company insurers that your past medical history could be a liability. I do understand that a medical form has to be submitted. But say if as a young adult you had some counselling or minor condition and that is all behind you. This could be used against you in the future.

Not so long ago some firms would ask outright on the application form about your attendance record. They had to stop doing so because it is discriminatory. I think the same would apply here.
Wouldn't stop the company simply saying "thanks for your application, but you have not been successful" and not giving a reason, though.
God this thread's making me feel paranoid...