Patients to be able to veto spine uploads

Tags: consent DH Government GP Scotland SCR

19 Dec 2006

Health minister Lord Warner yesterday announced a significant u-turn in government policy on patient's details being automatically loaded onto the NHS spine summary care record, stating that patients will now have the right to request their details not be uploaded.

Lord Warner announced the concession at a press conference yesterday to announce the publication of the ministerial task force on summary care records. Although it is unclear how such a compromise would work technically it does mark a step towards a potentially workable system.

According to the Guardian, Lord Warner said of patients concerned about their details being uploaded to the spine: "For all of them, if they don't want to have their information uploaded they can stop it before it is uploaded."

Warner was reported to say that a veto was offered to people in Scotland before the NHS began uploading a similar "emergency care summary", though only 250 out of 6m people opted out.

The first uploads of patient demographic details to the spine record have already occured, with NHS staff now able to use the national system to look up patient's non-medical details. This is the first national component of the planned systems of national summary records and detailed clinical records, which together form the Care Records Service meant to be implemented by 2010.

Until yesterday official government policy had been that automatic uploads of patient's details would happen automatically from GP systems, but patients could thereafter request that their details not be made electronically available on the SCR system to other NHS staff.

Last month the DH wrote to about 1300 patients who had requested to not have their details recorded onto the SCR system rejecting their request and stating they would have to demonstrate to the government, rather than their clinician, that uploading their details would cause them "considerable mental distress".

Link

Opt-out consent model to be kept for SCR

Reader's Comments

Common sense - or tactical withdrawel

nhsperson@yahoo.co.uk

19 Dec 06 12:12

I really do wonder at the sincerity of the push by doctors to allow patients to opt out. The claim is around confidentiality etc – but is this what is really driving their opposition?

For years patient identifiable and clinically sensitive data has been collated centrally without any real concern expressed by our clinical colleagues. But NPfIT, once delivered, will join this information up as never before.

Not only does this break the traditional role of GP being the gatekeeper of care, it underpins the whole choice agenda including an increasing role for the private sector. If your electronic record is available to any provider of care – all the existing limitations on who can provide that care go out the window. Continuity of care will be provided through the Care Record – and not your GP.

Perhaps an even greater threat is the ability to compare whole patient journeys when comparing clinical performance. The more we join up currently disperse clinical information – the more comparative information will exist.

I can only conclude that this is the real driving force behind opposition to NPfIT. The number of times that mistakes happen, sometime fatal mistakes, based on the lack of information sharing, lack of immediate access to clinical history, illegible handwriting etc makes opposition to NPfIT illogical from a patient care perspective. Given that are clinical colleagues are extremely bright – I think the patient confidentiality issue is being used as a clever way of trying to kill off NPfIT without owning up to the real reasons – the threat to the traditional cosy NHS model and the fear of good clinical performance information being available to patients – who will make increasingly informed choices about which care provider they use.

A clear vision of how CRS will work needed

19 Dec 06 12:12

I can't help feeling that this problem (like so many others) has its root in the lack of any convincing vision as to how the Care Record Service will actually work. It started with an airy aspiration that everyone who legitimately needed access to a patient's record should have it, which rapidly transmogrified into the spine. The thinking started with "let's put it all in a great big database" and has been stuck there ever since. In the intervening years we've been going round in circles with such questions as what data to put in it and who puts it there. The biggest problem of all has been that of building the panoply of structures around the CRS solely devoted to access control - role-based access, legitimate relationships and of course patient opt-outs. You get the impression that we're no further forward on this than we were three years ago.

I believe that the focus should not have been on the patient record but on systems that support teamwork in the delivery of care pathways - as their fundamental design principle, not an add-on. Teams would be defined in terms of roles that, as well as NHS professionals, would include patients, their families and workers in other fields. Roles, relationships and fine-grained opt-outs would all be handled as part of the team definition process - not as a separate admin overhead that makes everyone's life more difficult. Of course, that won't entirely get rid of the suspicion that "they" are out get hold of your records, but I think a teamwork focus, by communicating greater clarity as to what the CRS is actually for, would take some of the heat out of the debate.

To be fair to NPfIT, it was perhaps an easy mistake to make - the given impossible timescales and the Curse of Patient-Centricity (admirable as a value, not as a systems design principle). Is it too late to go down the teamwork route? Well, as I said above, I don't feel we've made much progress in the three years since I and colleagues advocated this approach in our response to "Delivering 21st Century IT Support to the NHS". But perhaps it was too late then.

I agree

19 Dec 06 12:12

I agree with a lot of what the previous commentator says. There is a lot of politics in this debate - the politics of information ownership - pretening to be concern for confidentiality. This will get sorted out, but only when the BMA has been pampered a bit more.

Patient confidentiality

rf@medicineit.com

19 Dec 06 17:12

I'm not a doctor. However, I'm a patient of the NHS and, while initially sceptical about the BMA motives, I fully agree with their stance now.

I firmly believe in the need to opt-out as I believe that it is my decision to share information from my past when I'm being treated today. I know people who only tell their GP information that they would never want another soul to know about. If, following consultation, the GP recommends that they should share that information with others, they then have the CHOICE to pass that information on.

I hate the belligerent egos that patronise people about the benefits of sharing data and how they should do so. Shame on you!

There are too many examples in history where experts have advocated a position only to be proven wrong. Why do all these NHS technical people believe in shattering a cultural relationship that has existed for hundreds of years? Do you have an equivalent history of success?

I do not trust the government to do the right thing by me when it comes to abiding by the law and protecting my interests. Just look at how the government has side-stepped the law in the War on Terror and the recent BAE fraud case.

Why should I trust them to manage my personal information for only my benefit? Your good will and sentiments are not enough!!

My livlihood depends on a NHS technical career....but I'm increasingly concerned about the government motives behind NPfIT, not the motives of the BMA.

Its not just the spine

gerard@careprovider.com

19 Dec 06 21:12

What is not known by the General public is that under CfH as soon as ANYTHING as typed on onn a G.P. computer the data will have left the bulding, as we are to be forced to use the regional LSP servers. G.P.s will no longer be the guardians of the patients records. This is nothing to do with spine uploads. CfH has a fetish to be rid of clincal computer servers within G.P. surgeries. So if the line is cut we will have not data to do clinics. A good idea is to have off-site encrpted backup. A bad idea is to have remote serving, the G.P computers as clients to massive regional servers. E-health insider has disccussed, it seems that the BT N3 broadband connections are not up to remote working anwyway. Keep data local under the Governance of the each G.P. surgery. Google health or similar could securely search for data within NHS net, and record that it has done so, if it was needed by a patient in hospital. We do not need to post data centrally at all. That concept is out of date.

It is not just about GP records

20 Dec 06 11:12

GPs have been the most vocal and engaged, because they are current users. But the arguments against Data Centre operation, as demonstrated by the Buncefield explosion http://www.e-health-insider.com/news/item.cfm?ID=2036 taking several hospitals back to paper records for a week, is that the CfH plans are too vulnerable, and weakly designed, despite the vast expense, to support the essential services of emergency care in hospitals as we move towards paperless practice.

Two-sided coin

20 Dec 06 16:12

I am concerned both about the motives of the government and the BMA. I think the analysis above on the true motive for GPs advising opt-out is incisive, and the intention to shift work away from them entirely plausible.

Indeed, based on demographic and healthcare trends, the traditional GP patient model could not cope in future, and is already eroded. Walk-in Centres are being built, NHS Direct has an entirely standalone relationship with patients, and private contractors are being encouraged to carve out the easy work.

We are partly victims of free-market thinking, and partly of a fascination with the USA healthcare system (which is of course struggling and inefficient). What is apparent is that no country has all the answers, and most circle each other, adopting each other's failing mechanisms in a spiral.

The alternative to the Summary care record is not that the GP is guardian of everything, but that s/he has the most complete fragment of the whole.

I take issue with CfH for the limitations and constraints of what they have built. This is way too big to do well. Had they listened more actively to criticism, and worked more incrementally it could be a lot better, and a lot more affordable.

Is enough of the vision worth this delivery mechanism ? I don't think so, but total freedom from control does not work either.

It's not just the spine

20 Dec 06 17:12

Re the previous post with this heading, as I wrote recently in answer to another story, remote viewing was exactly what was being developed by the NHSIA some two or three years ago. I had a working model demonstrated to me in my office! There is no need for a central database. As a senior NHS information professional I am weriting to my GP asking him not to allow the upload of any data from my record to the spine.

the truth?

21 Dec 06 09:12

I'm not sure if patients are aware but I know that at least one GP system supplier offers a service where data backup tapes are verified at the suppliers headquarters.

So that's unecrypted tapes of the whole GP database being sent by mail to be examined by none NHS personnel in a remote site.

So how exactly is that protecting patient confidentiality or am I just being cynical?

It's not just the spine

21 Dec 06 11:12

The point is that once data have been loaded onto the spine records will be linked to the database associated with the identity card scheme and then be available to government, politicians, civil servants, police, officials of the political party that happens to be in power at the time etc. Like it or not, the NHS is an agency of the government and will not be able to prevent goverment, and others associated with government, accessing personal and medical data on the spine. It is all part of the surveillance of citizens which the goverment is embarked upon. If the object was to create a medical record which could be transferred with the patient, it could be achieved by patient-held smart cards. A national database is not required.

Oops lost my record

21 Dec 06 13:12

I posted above that I share the mistrust in government (and GP) motives. A patient held record would solve our storage problems, and works with motivated groups, like maternity, and some ongoing conditions, but not universally.

Patients "forgetting to have their record with them" when they fall on the pavement, or not being able to remember which safe place they put the smartcard is far more the reality of healthcare than the active, informed and motivated citizen.

And the vast majority of the general population I talk to are just shocked that the health service is so un-joined-up. We need what is most reliable for those who use healthcare most. We must strive to stop interference from other agencies.

A patient accessable on-line record, with as few dissenters as possible, will be of most use to NHS staff and patients, though whether the spine will contain enough to actually be useful is another debate.

Don't trust 'em

jlgh_consult@dsl.pipex.com

05 Jan 07 19:01

I trust neither the civil service nor the LSPs to guarantee the confidentiality of my data in a system that can be accessed by half a million people.

Yes I know that there are other national databases (such as Clearnet) but my preference is for the minimum necessary accretion of widely-accessible personal data.