care.data

[Fia]

Latest post of the previous page:

Thank you for your list of concerns, Alan.

The way they have gone about this is wrong: the system is an opt-out one, not opt in

Quite. Yet something as important to people rather than business like organ donorship is opt in, rather than out. We clearly know where this vile government's priorities lie

[Alan H]

Giant patient records database 'should be delayed'

and

GP hit with contract notice over plan to opt all patients out of care.data

There's nothing that inspires confidence more than threatening legal action against someone who doesn't comply...

[Dave B]

The politics get more extreme every day it seems. The race is on to stuff as much Tory stuff into law as possible before the election.

[Alan H]

Indeed. Hopefully they will have zero opportunity after the General Election.

[Alan H]

This is getting beyond farcical: Police will have 'backdoor' access to health records despite opt-out, says MP

This may not be entirely correct. At present, police can, with a court order and after finding someone's GP (I don't know how they do that - do they just phone round GP surgeries?), can get hold of your health records. Under the new system, it appears that police can skip having to find your GP and can get your records from HSCIC. There is some doubt about what they can access if you have opted out, but it may be possible for them to get your records even if you have opted out.

Police still require a court order (possibly), but care.data would seem to make it much easier for them. There is a separate issue of police seeing your records (and things like family details), but they seemingly have always been able to do that. However, if this is correct, then this is yet something else we have not been told about care.data.

This was discovered when David Davis asked a question in the HoC:

Mr David Davis: To ask the Secretary of State for Health whether any medical data will be extracted by care.data from GP-held records of patients who have objected to the use of their confidential information by others than those providing them with care. [185516]

This was Dan Poulter's reply:

Dr Poulter [holding answer 3 February 2014]: In terms of information which identifies a patient, NHS England’s “Better information means better care” leaflet sets out how people can ask their GP practice to note their objections, which will prevent confidential, identifiable data about them being used by the care.data programme, other than in a very limited number of exceptional circumstances.

As examples, existing public health legislation may require data to control the spread of specific infectious diseases or the police may require information about an individual patient when investigating serious crime. Decisions are made on a case-by-case basis and must balance legal requirements, the duty of confidentiality owed to the patient and the accepted public interest in a confidential health service, all against any benefits that may arise from the disclosure.

It is important to note that provisions in the Health and Social Care Act 2012 are designed to strengthen and clarify the role of the Health and Social Care Information Centre so that information can be collected, held securely and made readily available to those who need it in safe, de-identified formats, with crucial safeguards in place to protect the confidential data it holds.

The Health and Social Care Act 2012 is clear that

“information which identifies or enables identification of a person must not be published”. (My emphasis)

He doesn't specifically say a court order is still required, but I assume this is the case.

I have still not come across one single Government source that doesn't omit significant details about how this works, who will have access, how that access is regulated, how someone can opt out, what those optouts actually mean. It's a complete shambles.

[Alan H]

Care.data 'will allow police access to patient records without informing GPs'

Medical info in CARE.DATA not 'properly anonymised'

[Alan H]

By far the best guide to care.data so far, but still some unclear points: A simple guide to Care.data

[Alan H]

Still lots of unknowns, uncertainties, confusion and mistrust. This is quite a good summary of the current position: NHS data sharing: taking stock

[Dave B]

Seems that I was supposed to have received a leaflet on this by now, according to Radio 4's PM prog.

Seems I am one of lots who cannot recall having received this leaflet - an MP said "people dump stuff unread" (paraphrased). I always check mail carefully, even opening junk mail envelopes from Virgin et al, before dumping anything.

Failure there then. Does not inspire any kind of confidence in the professionalism of those organising the scheme. Or the MPs promoting it.

[Alan H]

Does not inspire any kind of confidence in the professionalism of those organising the scheme. Or the MPs promoting it.

I have had a couple of Twitter exchanges with Geriant Lewis - the man in charge of all this - and I do not doubt his integrity. However, it's the handling of it all, the difficulty on getting straight answers to straight questions and the possible misuses - particularly by a Tory Government - in the future that are the real concerns.

[Dave B]

Does not inspire any kind of confidence in the professionalism of those organising the scheme. Or the MPs promoting it.

[...] However, it's the handling of it all, the difficulty on getting straight answers to straight questions and the possible misuses - particularly by a Tory Government - in the future that are the real concerns.

+1

As I said before, I am very much for this idea if it is to be used to generate statistics that will aid in treatment and research - with those stats being 100% anonymised, no possible chance of any attaching identities to the data.

[Alan H]

it's just for England, as so much of the Tory bungling...

Ah...coming later this year exclusively to Scotland... Scottish Primary Care Information Resource. It would appear to be identical to care.data, but apparently not mandatory and pseudonyms will be used by GPs, so that might make it more acceptable.

[Alan H]

Listen to a discussion of care.data with Dr Neil Bhatia and the aforementioned Geriant Lewis on the PM programme today from 15 m 40s in.

[Dave B]

Yes, that was the PM item I referred to above (from yesterday!).

I did do a doublethink after and wondered who delivered the leaflet. I have a "No Junkmail" poster on my door that actually lists things - including leaflets. This does not seem to stop some pizza places or all post people, but the deliverer of that may have honoured my request if the leaflet was not in an envelope addressed to my number!

Added: I looked on the Internet for anything about opting out - not found it yet, I seem to remember something about not being able to opt out via the web. I also seemed to remember that the Nffield Trust were involved with this scheme in some way and found this. which discusses access to medical in general and care.data in particular.

With regard to the information included in the care.data programme, there are two transfers of data. The first is from the GP practices to HSCIC, which will include NHS number and postcode so that those data can be accurately linked with data from other health care providers (within HSCIC). The second transfer is from HSCIC to the approved users, which will be strongly pseudonymised and will not include NHS number or postcode.

With all the systemic mistakes and leaks that have been made regarding data by official and commercial organisations can one be sure that the system, and its administrators, can do the job safely? Can they even design the system to be foolproof (without going massively over budget/time and then scrapping it altogether (because it does not work) at a cost to every person in the country)?

[Alan H]

Yes, that was the PM item I referred to above (from yesterday!).

Ah! Missed that.

I did do a doublethink after and wondered who delivered the leaflet. I have a "No Junkmail" poster on my door that actually lists things - including leaflets. This does not seem to stop some pizza places or all post people, but the deliverer of that may have honoured my request if the leaflet was not in an envelope addressed to my number!

There is doubt whether those who have opted out of the Royal Mail's junk mail delivery scheme (I forget its proper name), where we're supposed to get no unaddressed junk mail, will receive the leaflet. There is provision for that preference to be overridden in exceptional circumstances, but it's taking an FOIA request to find out. We are supposed to be opted out (it doesn't always work) and we've not received out leaflet yet.

[Dave B]

Had I got my spelling right in my search string I would have found this the first time round!

In January 2014, NHS England sent out a leaflet entitled Better information means better care (2MB PDF) via junk mail. It was not addressed directly to you as a patient and it deliberately didn’t include an opt-out form. The leaflet says you should “speak to your GP practice” if you want to opt out. This is misleading and could waste your time and potentially waste valuable GP appointment time as well.

And that may hold the answer about whether the leafletter honoured my "No junk mail" poster!

I am not worried about my data carrying identifiers within the NHS system (providing they have their security right!), my concerns are that commercial organisation may be able to get back to the identifiers and I am not reassured about this. Commercial organisations can get lots of interesting info from stats about how long people lived after X condition with Y medicine and, maybe how many did not. They do not need to know who I am for research purposes. If they wish to recruit volunteers for research there are ways to do that as open invitations.

[Alan H]

David Davis MP gave a good example:

"I have had my nose broken five times. Once you know that, I am probably in a group of 100 people in England. Then you figure out when I had my diptheria jab, usually done at birth, and bang you got me. Let me be clear: people can be identified from this data."

Now, I really suspect most who have access to the data will not even go to these lengths to identify someone, but despite assurances that the data is not given out will-nilly, there is that possibility. I would still be worried if someone did this to a politician. It's probably worth saying that we're told that some sensitive data are not transferred (as well as free text), such as HIV status, abortions, etc. However, that still leaves a lot of very personal information to be discovered.

[Dave B]

David Davis MP gave a good example:

"I have had my nose broken five times. Once you know that, I am probably in a group of 100 people in England. Then you figure out when I had my diptheria jab, usually done at birth, and bang you got me. Let me be clear: people can be identified from this data."

Now, I really suspect most who have access to the data will not even go to these lengths to identify someone, but despite assurances that the data is not given out will-nilly, there is that possibility. I would still be worried if someone did this to a politician. It's probably worth saying that we're told that some sensitive data are not transferred (as well as free text), such as HIV status, abortions, etc. However, that still leaves a lot of very personal information to be discovered.

I wonder if anyone will actually have the contacts to do a "test" probe into the data for, say, info on a politician (preferably Cameron) and publish that it is possible?

BTW anyone else seen that Cameron means "crooked nose"?

[Alan H]

Adults 'unaware of NHS data plans'

Fewer than a third of adults recall getting a leaflet about changes to the handling of medical records, a poll for BBC Radio 4's PM programme suggests.

Not good for informed consent...

[Dave B]

Adults 'unaware of NHS data plans'

Fewer than a third of adults recall getting a leaflet about changes to the handling of medical records, a poll for BBC Radio 4's PM programme suggests.

Not good for informed consent...

Perhaps "informed consent" applies only to what they are going to do to you in terms of medical procedures. I asked once who had ownership of my medical records and was told that it was the local NHS board - I had the right to view them but not change anything. So, they can do what they like with "their" property?

[Alan H]

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.