Two weeks ago I posted about the Summary Care Record, a project to centralise medical records in England and Wales under the pretext that central records might be useful in emergency care. At the time, I wrote to the Cabinet Secretary asking whether it was appropriate to use taxpayers’ funds to leaflet millions of homes on a politically sensitive topic during an election campaign; I haven’t yet got a reply.
Doctors’ leaders are now alarmed. Patients are being misinformed, and opt-out is being made difficult.
The information being given to patients is false and misleading. The SCR promotional leaflet says anyone who has access to your records … must be directly involved in caring for you. However, large numbers of officials will have access. And as I already noted, the SCR isn’t as helpful in emergencies as it’s spun. Its purpose is actually different: to provide the basis for a centralised electronic patient record for everyone.
Doctors have noted that in the pilot areas, seven out of ten patients are unaware that an SCR was created for them. The patient information packs don’t contain an opt-out form; you’re supposed to phone the call centre for one. Over two hundred thousand people have downloaded an opt-out letter from www.thebigoptout.org; now the NHS says it wants doctors to ignore this and get everyone who wants to opt out to use this form instead (which GPs can’t order in bulk).The roll-out is rushed and displays typical incompetence: for example, some patients have been sent other patients’ letters. I am sure this story will run and run.
According to the Changes to your health records booklet, page 9, there are 3 options: No record, partially populated record, fully populated record. You will note from the opt-out form that it only opts you out of having clinical data in your record. ie they could create a record for you with no clinical data in it and still be “following your expressed wishes”. And yet the covering letter says that, provided you indicate your wish early enough, it is possible to prevent any record from being created. But you can’t do that using any of the standard available forms! Or am I being paranoid?
Chiron, I’m afraid that fifteen years’ experience of dealing with the Department of Health on various aspects of IT policy from safety through privacy to value for money have taught me to assume the worst. Occasionally you get pleasantly surprised, but not often!
Thanks for the noscr link, filled the form in, it’ll be with the doc tommorrow!
some patients have been sent other patients’ letters
I received (in Cambridgeshire) a letter for someone else (a day before my own one arrived). I suppose it might be for a previous owner (but two) of my house — I’ve only lived there 10 years!
Have sent it to the Information Commissioner with a complaint, since there appear to be breaches of the 4th and 7th principles.
More press coverage in the Times, the Telegraph, Nature, the BBC and e-health Insider; plus guidance from the BMA.
… while Computer Weekly now has a transcript of today’s debate between spokesmen for the BMA and the Department of Health, and Pulse has more on the BMA letter whose text is here:
(to Mike O’Brien)
We are writing to express our serious concern about the recent accelerated roll out of the Summary Care Record (SCR). We urge you to consider, as a matter of urgency: (i) a halt to the roll out of the SCR in the areas which have not yet begun their Public Information Programmes (PIPs); (ii) inclusion of an opt-out form in the information material to patients; and (iii) the permanent withdrawal of BMA comment from the NHS Connecting for Health promotional video.
The British Medical Association, including the General Practitioners Committee, accepted limited roll out of the SCR on the basis of acceptance of the recommendations of the University College London (UCL) evaluation in 2008, and given the commitment that there would be a further thorough independent evaluation. In a letter of 1st October 2008, to the Clinical Director of the SCR, the BMA stated ‘there will need to be a review of the Public Information Programme, which failed to inform all patients of their choices in the early adopter practices’. We also stated that ‘once agreed the new [consent] model should be carefully piloted with a limited number of practices before any wider roll out’. We are therefore very surprised and disappointed that a much wider roll out was announced in December 2009 and this is in progress counter to the BMA’s position above. This is also prior to the publication of the second UCL evaluation, which we understand is scheduled for publication shortly. It is of note that NHS Connecting for Health committed to take on board the recommendations of the first UCL evaluation in 2008, which was commissioned by NHS Connecting for Health itself. The nature and haste of the current roll out falls foul of this. The BMA’s Working Party on NHS IT expressed this concern clearly at its meeting on 11th February 2010, at which there was NHS Connecting for Health presence. On 18th February 2010, the General Practitioners Committee had a vote which raised serious concerns about the current SCR roll out.
We are receiving reports from GPs that they feel unprepared and unsupported for the SCR and in some areas the roll out is taking place without the support and involvement of the Local Medical Committee. This is a direct consequence of the shortened timescale, which involved the announcement of funding in mid December 2009 and required it to be spent by PCTs on PIPs by the end of March 2010. This has resulted in implementation being rushed to meet this deadline. We are concerned that this is also impacting upon the level of patient awareness resulting in records being created without even implied or presumed patient consent. It does not allow GPs and practices the requisite time and resources to support patients in making informed choices about the upload of their medical information.
The UCL independent evaluation found that the PIP had failed to inform patients of their choices, with seven out of ten patients in early adopter areas unaware of the SCR. The BMA’s acceptance of the consent-to-view model was subject to a review of the PIP. We recognise that the PIP is now conducted on a regional, rather than PCT, basis but there has been no evaluation or evidence presented to the BMA that this has significantly improved awareness and that consent is therefore valid. We are also concerned that an opt-out form is not included with the patient information material and patients have to log onto a website to download a form, request a form from a call centre or inform their GP practice. We have also heard that there may be issues around how easy it is to download the form which further exacerbates our concern.
There remain a number of significant issues, which still require resolution, prior to a full scale roll out. The IM&T DES ended at the end of March 2009, with a proportion of practices yet to be accredited. The BMA and GPC are concerned that this will affect the quality of the information included in SCRs. Whilst all GP practices should ensure that their data are as accurate as possible, data that are an appropriate standard for sharing within the practice may not be in an appropriate format to share with other organisations. Therefore this requires additional support; something that was in place in early adopter areas.
The UCL independent evaluation was inconclusive about workload issues. We believe that SCRs will generate extra work, which is not part of the GMS contract. In addition to the workload associated with ensuring data are of an appropriate quality for sharing, we feel that supporting patients to ensure their consent for the SCR is informed and adding information to the SCR following a GP consultation will impact adversely upon GP practices. Dealing with returned mail and FP69 procedures is also a sizeable task.
At some NHS Connecting for Health meetings, with local GPs, we understand that BMA support for the accelerated roll out has been incorrectly implied. In particular we are aware of the use of a promotional NHS Connecting for Health video, also available on the NHS Connecting for Health website, which includes a BMA view relating to the original UCL evaluation and early adopter programme. We are concerned that this video is being associated with the current, accelerated roll out, which runs counter to the BMA position and the UCL evaluation recommendations. We request that this BMA comment is removed from the video forthwith to ensure that there is no misrepresentation of the BMA’s position regarding the accelerated roll out.
In view of these concerns a significant number of members of the General Practitioners Committee are seriously concerned and are calling for a boycott of the SCR and for the BMA to advise its members against uploading information onto the spine. We urge you to halt this precipitate roll out in the areas which have not yet begun PIPs so that the results of the UCL evaluation can be considered and progress in the latest SHAs to go live, which will create the required critical mass, can be properly considered. Failure to do so will jeopardise the earlier gradual implementation and potentially the whole programme.
The BMA and GPC have tried to be helpful in its engagement with NHS Connecting for Health to ensure appropriate implementation of SCRs, which would be based upon evaluation, evidence and informed consent by patients and the public. We are deeply disappointed that the current national roll out has bypassed the BMA’s views, and ignored our goodwill which we have provided up until now.
We look forward to hearing from you as a matter of urgency.
Dr Hamish Meldrum, Chairman of Council, BMA
Dr Laurence Buckman, Chairman of General Practitioners Committee, BMA
Dame Deirdre Hine, Chair of the BMA’s Working Party on NHS IT
More in today’s Telegraph (and in the letters). And here is the BMA press release.
Latest admission from the Department – people whose letters went missing will have their files uploaded anyway without their consent. Also, people who phone for an opt-out form are subjected to an unpleasant interrogation. But at least one practice is doing it right, and making sure they get informed consent from everyone whose details are uploaded.
Well I just rang up to ask for an opt-out form.
The person I spoke to was helpful and didn’t ask if I worked for the NHS… he seemed friendly (for working on Saturday evening!).
The ironic thing was that at first his computer had to be restarted, so he kept me on hold after I’d told him my name. Then after I’d asked to opt-out, he had to use a different database which had also ‘been playing up’ all day!
I couldn’t help laughing I’m afraid.
Don’t miss the opt-out page of Dr Neil Bhatia – he has collected far more links than I’d ever have time to.
… and here’s what’s happening with similar systems in Ireland. Even catering staff get access to the record – after all, they need to know whether to serve you diabetic or low-fat food. And as the records aren’t partitioned into more sensitive and less sensitive parts, they have to get everything.
Hi
I tried and faled at all times of day and night to down load a form, no go! I phoned and after 2 and a halve weeks got the form, all that just to take it to my doctor who was not allowed to accept my verbal comand not to up-load my details