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care.data

...on serious topics that don't fit anywhere else at present.
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Alan H
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Re: care.data

#41 Postby Alan H » February 15th, 2014, 2:02 pm

Latest post of the previous page:

I was referring to the informed consent under the Data Protection Act. If that had not been overruled by provisions in Lansley's NHS 'reform' Act, the Health and Social Care Act 2012, it would be illegal for the HSCIC to take data from GPs without specific individual consent. However, the H&SC Act has lots of things buried in it that were not highlighted at the time.
Alan Henness

There are three fundamental questions for anyone advocating Brexit:

1. What, precisely, are the significant and tangible benefits of leaving the EU?
2. What damage to the UK and its citizens is an acceptable price to pay for those benefits?
3. Which ruling of the ECJ is most persuasive of the need to leave its jurisdiction?

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Dave B
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Re: care.data

#42 Postby Dave B » February 15th, 2014, 2:08 pm

Alan H wrote:I was referring to the informed consent under the Data Protection Act. If that had not been overruled by provisions in Lansley's NHS 'reform' Act, the Health and Social Care Act 2012, it would be illegal for the HSCIC to take data from GPs without specific individual consent. However, the H&SC Act has lots of things buried in it that were not highlighted at the time.
Ah, thanks for the explanation.

So, they have modified one act, removing our consent, to make sure their plans for another, for giving our data away, are effective?
"Look forward; yesterday was a lesson, if you did not learn from it you wasted it."
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Alan H
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Re: care.data

#43 Postby Alan H » February 15th, 2014, 2:20 pm

Dave B wrote:So, they have modified one act, removing our consent, to make sure their plans for another, for giving our data away, are effective?
...in one...

Of course, if they had asked for individual consent from each of us, this would never have got off the ground (cf organ donation opt-in). We would still have been highly suspicious of motives, and, I think, rightly so. I feel sure we cannot rely on the Tories stopping their NHS privatisation here: they will want to continue it to privatise the funding of services by moving it from the State to individuals' private health insurance or co-funding. And what they need to do that is a central database of everyone's records. It would be a very minor tweak to legislation to override even the options we currently have and to allow insurance companies access to that data - even if it is a big political move.
Alan Henness

There are three fundamental questions for anyone advocating Brexit:

1. What, precisely, are the significant and tangible benefits of leaving the EU?
2. What damage to the UK and its citizens is an acceptable price to pay for those benefits?
3. Which ruling of the ECJ is most persuasive of the need to leave its jurisdiction?

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Alan H
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Re: care.data

#44 Postby Alan H » February 18th, 2014, 12:37 pm

Royal College of GPs calls for reassurances before controversial data scheme goes ahead

Publication date: 18 February 2014

The RCGP has written to NHS England requesting a six-point plan of action to reassure patients before it goes live with the controversial care.data scheme.
In the letter, RCGP Honorary Secretary Professor Nigel Mathers calls on the organisation to show that it is "beyond reproach" and that it has done "everything practically possible" to ensure that patients and the public know about their rights to opt out of the data sharing initiative.

The RCGP is asking for further clarification for the public on how their data will be used, including:

The purposes for which "amber" (pseudonymised but potentially identifiable data) can be disclosed , with particular assurance that organisations outside the NHS will not be permitted to use such data for commercial purposes.
Confirmation that any information disclosed by the Health and Social Care Information Centre (HSCIC) to third parties will not be sold for profit, but instead be charged for on a cost-recovery basis only.
Confirmation of who will take decisions on the disclosure of identifiable and potentially identifiable data, and the robust controls that will be put in place to manage its use.

It says that NHS England should significantly boost its efforts to communicate the scheme to the public by taking measures such as:

National TV, radio and online adverts highlighting the need for people to decide whether they wish to opt out.
A personalised letter to everyone whose records could potentially be uploaded onto the care.data system, to supplement the leaflet which is already being distributed to each household.
Further work to ensure that information is accessible to those with physical and or learning disabilities, and that appropriate support is available to enable them to make an informed choice.
In the letter, Professor Mathers says: "The RCGP believes that care.data has the potential to deliver enormous benefits for patients by helping the NHS to improve the quality of care it delivers.

"While we recognise the substantial programme of activity and materials that has already been developed to communicate care.data, we believe that there is a deficit of awareness and understanding regarding the scheme amongst many members of the public and professionals.

"If the roll out of care.data is to go ahead according to the current schedule, action is urgently needed to tackle this, and to ensure that there is absolute clarity about how the scheme will work."

He adds: "Crucially, where a scheme is based on an opt out approach, such as in the case of care.data, we believe that it is vital that the NHS is able to show that it is beyond reproach in having done everything practically possible to ensure that patients and the public know about their right to opt out prior to it going ahead.

"At present, we are concerned that levels of awareness concerning care.data are very low, and believe that there is a strong case for substantial additional activity over and above that already in place to tackle this."
Alan Henness

There are three fundamental questions for anyone advocating Brexit:

1. What, precisely, are the significant and tangible benefits of leaving the EU?
2. What damage to the UK and its citizens is an acceptable price to pay for those benefits?
3. Which ruling of the ECJ is most persuasive of the need to leave its jurisdiction?

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Alan H
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Re: care.data

#45 Postby Alan H » February 18th, 2014, 5:34 pm

It looks like NHS England have just announced that the grabbing of care.data from GPs has been postponed till the Autumn and that they will tell everyone personally by letter with an optout form. A step in the right direction, but I doubt it will be any where near sufficient to allay fears about uses of the data and security.
Alan Henness

There are three fundamental questions for anyone advocating Brexit:

1. What, precisely, are the significant and tangible benefits of leaving the EU?
2. What damage to the UK and its citizens is an acceptable price to pay for those benefits?
3. Which ruling of the ECJ is most persuasive of the need to leave its jurisdiction?

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Dave B
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Re: care.data

#46 Postby Dave B » February 18th, 2014, 5:44 pm

Alan H wrote:It looks like NHS England have just announced that the grabbing of care.data from GPs has been postponed till the Autumn and that they will tell everyone personally by letter with an optout form. A step in the right direction, but I doubt it will be any where near sufficient to allay fears about uses of the data and security.
Should be a personal choice, boxes to tick on the form:

I do not wish my data to be used by any other than those directly involved in my personal healthcare.
I agree to my data being made available, for the purposes of treatment or research, to those within the NHS only.
I agree to my anonymised data being made available, for research purposes only, to licensed users outside the NHS under strict scrutiny.
"Look forward; yesterday was a lesson, if you did not learn from it you wasted it."
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Alan H
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Re: care.data

#47 Postby Alan H » February 18th, 2014, 5:49 pm

It was announced on Radio 4's PM programme, but it sounds like they will simply be telling us about how to opt out and do nothing to address the underlying issues around data uses (now and in the future) and security, nor giving us the chance to opt out properly. However, it does give an opportunity to better inform the public, something they have singularly failed to do so far.

As someone on Twitter has just said, they had two years to inform us of it and lost control of the campaign in less than a month.
Alan Henness

There are three fundamental questions for anyone advocating Brexit:

1. What, precisely, are the significant and tangible benefits of leaving the EU?
2. What damage to the UK and its citizens is an acceptable price to pay for those benefits?
3. Which ruling of the ECJ is most persuasive of the need to leave its jurisdiction?

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Alan H
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Joined: July 3rd, 2007, 10:26 pm

Re: care.data

#48 Postby Alan H » February 18th, 2014, 5:54 pm

Alan Henness

There are three fundamental questions for anyone advocating Brexit:

1. What, precisely, are the significant and tangible benefits of leaving the EU?
2. What damage to the UK and its citizens is an acceptable price to pay for those benefits?
3. Which ruling of the ECJ is most persuasive of the need to leave its jurisdiction?

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Dave B
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Re: care.data

#49 Postby Dave B » February 18th, 2014, 9:09 pm

Score one for the voice of the people!

Twitter et al have their uses.
"Look forward; yesterday was a lesson, if you did not learn from it you wasted it."
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Alan H
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Re: care.data

#50 Postby Alan H » February 19th, 2014, 1:03 am

NHS in England delays sharing of medical records
GP and patient groups hail decision to put launch of care.data back six months to give more patients more time to evaluate opt-outs
Alan Henness

There are three fundamental questions for anyone advocating Brexit:

1. What, precisely, are the significant and tangible benefits of leaving the EU?
2. What damage to the UK and its citizens is an acceptable price to pay for those benefits?
3. Which ruling of the ECJ is most persuasive of the need to leave its jurisdiction?

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Dave B
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Joined: May 17th, 2010, 9:15 pm

Re: care.data

#51 Postby Dave B » February 19th, 2014, 9:33 am

I notice that, gradually, the spokespeople for the having the data shared are getting more and more specific as to who will have access. One said that it will only be the NHS or companies contracting to the NHS who will have access. The sale to insurance companies etc will be a criminal offence.

That contrasts with another, a few days ago, who said that he could see no problem with insurance companies having access.

One gets a feeling that they might be changing the rules, behind the scenes, to appease the public without actually saying this is what they are doing (standard political manoeuvre). Or it's a case of right hand not knowing what left hand is doing (standard governmental unjoined-up situation.)

Now, after my heart attack there was no change in my insurance policies, well, not the car or house - I do not have life insurance. Motorists are graded, by age and number of accidents/motoring convictions/job/location for what they pay. I do not know if this counts for life cover as well.

That will be based on legally available stats. I wonder if any, even anonimised, survivability stats could/would be used for a similar purpose? I suppose one should expect to pay a bit more, for life insurance at least, if one's life span was liable to be shortened by illness.
"Look forward; yesterday was a lesson, if you did not learn from it you wasted it."
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Tetenterre
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Re: care.data

#52 Postby Tetenterre » February 19th, 2014, 12:08 pm

Fax Your GP may be of interest to those wishing to opt out.
Steve

Quantum Theory: The branch of science with which people who know absolutely sod all about quantum theory can explain anything.

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Alan H
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Re: care.data

#53 Postby Alan H » February 19th, 2014, 12:47 pm

Dave B wrote:I notice that, gradually, the spokespeople for the having the data shared are getting more and more specific as to who will have access. One said that it will only be the NHS or companies contracting to the NHS who will have access. The sale to insurance companies etc will be a criminal offence.

That contrasts with another, a few days ago, who said that he could see no problem with insurance companies having access.

One gets a feeling that they might be changing the rules, behind the scenes, to appease the public without actually saying this is what they are doing (standard political manoeuvre). Or it's a case of right hand not knowing what left hand is doing (standard governmental unjoined-up situation.)

Now, after my heart attack there was no change in my insurance policies, well, not the car or house - I do not have life insurance. Motorists are graded, by age and number of accidents/motoring convictions/job/location for what they pay. I do not know if this counts for life cover as well.

That will be based on legally available stats. I wonder if any, even anonimised, survivability stats could/would be used for a similar purpose? I suppose one should expect to pay a bit more, for life insurance at least, if one's life span was liable to be shortened by illness.
That's been one of the major issues: it's not entirely clear who could have access. Some research organisations could certainly have access and any request would be thoroughly scrutinised by the HSCIC. I have no doubt about that. We (I think) already know that the likes on Bupa already do get access to some existing data for research purposes, but we have to take it on trust... And therein lies the problem: do we trust the HSCIC (possibly); do we trust the insurance companies (no); do we trust the Government not to change the rules in future (definitely not). A big problem is that once the genie is out of the bottle (ie our health data is passed to the HSCIC, we cannot take it back - all we can do is stop further extractions from our GP being transferred to Atos/HSCIC.

And another big problem is the punishment for breaches by, say, pharmaceutical companies. As someone put it, the fines that can be levied by the Information Commissioner for breaches of the Data Protection Act, although up to £500,000 are the order of a mere rounding error on the balance sheet of many pharmaceutical companies.
Alan Henness

There are three fundamental questions for anyone advocating Brexit:

1. What, precisely, are the significant and tangible benefits of leaving the EU?
2. What damage to the UK and its citizens is an acceptable price to pay for those benefits?
3. Which ruling of the ECJ is most persuasive of the need to leave its jurisdiction?

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Dave B
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Re: care.data

#54 Postby Dave B » February 19th, 2014, 1:13 pm

Tetenterre wrote:Fax Your GP may be of interest to those wishing to opt out.
Thanks for that link, Steve. I have friends who will be interested.
"Look forward; yesterday was a lesson, if you did not learn from it you wasted it."
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Alan H
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Re: care.data

#55 Postby Alan H » February 19th, 2014, 1:47 pm

Dave B wrote:
Tetenterre wrote:Fax Your GP may be of interest to those wishing to opt out.
Thanks for that link, Steve. I have friends who will be interested.

To be honest, you'd be better writing a letter to your GP - they may not now have a fax and there is no way of knowing if it is received correctly. Also, if the fax numbers are well out of date, the number could have been re-allocated to anyone else (although not sure who uses faxes these days).
Alan Henness

There are three fundamental questions for anyone advocating Brexit:

1. What, precisely, are the significant and tangible benefits of leaving the EU?
2. What damage to the UK and its citizens is an acceptable price to pay for those benefits?
3. Which ruling of the ECJ is most persuasive of the need to leave its jurisdiction?

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Dave B
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Joined: May 17th, 2010, 9:15 pm

Re: care.data

#56 Postby Dave B » February 19th, 2014, 2:15 pm

Alan H wrote:
Dave B wrote:
Tetenterre wrote:Fax Your GP may be of interest to those wishing to opt out.
Thanks for that link, Steve. I have friends who will be interested.

To be honest, you'd be better writing a letter to your GP - they may not now have a fax and there is no way of knowing if it is received correctly. Also, if the fax numbers are well out of date, the number could have been re-allocated to anyone else (although not sure who uses faxes these days).
Depends - I think that there is some kind of "fax" system within the NHS IT system. I know that my GP has said, "Yes, the consultant faxed me a letter last week." Not, "Emailed me . . ."

If it is an NHS infrastructure system, though, I doubt that others would have access. I admit that I can't find a fax number for him listed, but then the surgery email is not listed either!
"Look forward; yesterday was a lesson, if you did not learn from it you wasted it."
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Alan H
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Re: care.data

#57 Postby Alan H » February 19th, 2014, 2:37 pm

It could well be they all have faxes - remember the time when businesses still needed a Telex machine because faxes were not to be trusted? Maybe the same now, but I doubt there is a separate infrastructure for them, just a normal BT* line.




* Other telephone providers available.
Alan Henness

There are three fundamental questions for anyone advocating Brexit:

1. What, precisely, are the significant and tangible benefits of leaving the EU?
2. What damage to the UK and its citizens is an acceptable price to pay for those benefits?
3. Which ruling of the ECJ is most persuasive of the need to leave its jurisdiction?

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Dave B
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Joined: May 17th, 2010, 9:15 pm

Re: care.data

#58 Postby Dave B » February 19th, 2014, 3:51 pm

Alan H wrote:It could well be they all have faxes - remember the time when businesses still needed a Telex machine because faxes were not to be trusted? Maybe the same now, but I doubt there is a separate infrastructure for them, just a normal BT* line.
OK, I used "infrastructure" in the loose Internet sense rather than a physical wire betwixt the surgery and some NHS IT hub locally. Though, having said that, they may have a dedicated BT line as many other organisations do. All the test results etc are available on some kind of network for sure and appointments can be booked with clinics from the surgery. When my INR (Warfarin) level hit 9 and I was in severe danger of a stroke the urgent instructions to the surgery to prepare a vitamin K dose was faxed - I assume to make sure it was not lost in the system's routine traffic. Then I was phoned and told to get to the surgery ASAP.
"Look forward; yesterday was a lesson, if you did not learn from it you wasted it."
Me, 2015

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Alan H
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Re: care.data

#59 Postby Alan H » February 21st, 2014, 8:02 pm

Margaret McCartney in the bmj: Care.data: why are Scotland and Wales doing it differently?

And ben Goldacre in the Guardian today: The NHS plan to share our medical data can save lives – but must be done right
Care.data, the grand project to make the medical records of the UK population available for scientific and commercial use, is not inherently evil – far from it – but its execution has been badly bungled. Here's how the government can regain our trust

Ben nails many of the issues and how they can be remedied. However, I think he misses three very important points:

1. Once they have your data, it cannot be taken back.

2. You can never know what your data is being used for or who it is given to.

3. There is no discussion about what the Government might use your data for in the future.
Alan Henness

There are three fundamental questions for anyone advocating Brexit:

1. What, precisely, are the significant and tangible benefits of leaving the EU?
2. What damage to the UK and its citizens is an acceptable price to pay for those benefits?
3. Which ruling of the ECJ is most persuasive of the need to leave its jurisdiction?

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Dave B
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Joined: May 17th, 2010, 9:15 pm

Re: care.data

#60 Postby Dave B » February 21st, 2014, 8:19 pm

Also, since the post code will be included in "pseudonymised" data; a listener to PM today said that they lived in an area where many houses had a unique post code, too separated for street codes, so they would be very easily identified.

I will admit to being ambivalent here. I very much agree that data mining can be a huge benefit but, as has been reiterated many times, there are not enough iron clad safeguards.

And I would not trust any government in this instance - there would have to be a totally independent regulator, with the full backing of law behind it, for this alone.
"Look forward; yesterday was a lesson, if you did not learn from it you wasted it."
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Alan H
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Re: care.data

#61 Postby Alan H » February 21st, 2014, 8:32 pm

Dave B wrote:Also, since the post code will be included in "pseudonymised" data; a listener to PM today said that they lived in an area where many houses had a unique post code, too separated for street codes, so they would be very easily identified.

I will admit to being ambivalent here. I very much agree that data mining can be a huge benefit but, as has been reiterated many times, there are not enough iron clad safeguards.

And I would not trust any government in this instance - there would have to be a totally independent regulator, with the full backing of law behind it, for this alone.

The elephant in the room is that (I suspect) this kind of data are invaluable when the Tories (or whoever) want to take privatisation of the NHS to the next level. I can't be sure of how, what and when but it is a concern that has to be addressed.
Alan Henness

There are three fundamental questions for anyone advocating Brexit:

1. What, precisely, are the significant and tangible benefits of leaving the EU?
2. What damage to the UK and its citizens is an acceptable price to pay for those benefits?
3. Which ruling of the ECJ is most persuasive of the need to leave its jurisdiction?


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