NHS Summary Care Record

SCR logo

People living in London and four other strategic health authorities are currently receiving information in the post about the rollout of the NHS Summary Care Record (SCR) system.  SCR is part of the NHS Care Records System, a large UK government IT project which aims for more effective sharing of patient records between NHS services.  When the system is in full swing, NHS staff in Newcastle (say) will be able to access the medical records of someone requiring care whose residence and GP is in Penzance.  The SCR will initially contain records of such things as medications and allergies, but may eventually become more detailed and also allow access to specialists’ letters and scans.

Controversy about this centralised system has been rumbling on for some time and before you read further I must declare my hand: I have opted out.

No record system is perfect.  Whenever you meet with any NHS healthcare professional a record will be made of your interaction and, in these days of team working and shift work, this could be seen by a fairly large number of people.  Equally if you are a patient on a ward, patient notes are most often not kept under lock and key and are therefore accessible to any nosey parker who happens to walk by.  Patient records are currently kept locally, for example within a particular NHS trust, and are shared within NHS organisations on a ‘need to know’ basis.  Most specialists who see a patient will write and inform their GP.

As with other large database projects – of which this country now has legion – the advantages of sharing information must be balanced with the possible pitfalls.  The SCR’s benefits are most obvious for forgetful people who have a serious medical condition or allergy and are visiting friends out of town.  This is a relatively small number of people and for the rest of us the benefits appear to be marginal.  The rollout of the SCR raises serious questions around the issues of privacy, legality, effectiveness, and cost.

Privacy

In order for medical care to function effectively it is clearly absolutely essential that patients feel that their records are kept confidential.  In line with this the leaflet Changes to your health records states that ‘anyone who has access to your records… must be directly involved in caring for you’.  However this Connecting for Health document concedes that access will also be possible, without a patient being informed, ‘in the public interest’, ‘by statute’ or by court order.

The wide access necessary for the SCR to be effective massively increases potential for snooping.  This is something of which Gordon Brown and Alex Salmond may already be aware.  In order to police access to the SCR all NHS staff will be issued with a chip and pin card and retrieval of any record will leave an audit trail.  But this does not address unauthorized access through logged in but unattended terminals, a common occurrence, or the accidental accessing of an incorrect patient’s record as a result of partial patient identifying details.  Audit trail or not, it is hard to imagine that such a vast database can be effectively policed.

Central to the concept of privacy is deciding to whom your personal details should be displayed.  Inclusion in the SCR is currently ‘opt-out’.  Unless you make your wishes known, as I did, your patient records will become part of the SCR by default.  This use of ‘presumed consent’ presupposes that individuals are aware of the SCR’s existence; yet in pilot areas many people were not (section 6.1.7).  The recent mailings do not include an opt-out form, and opting out appears to be being made deliberately difficult.  GPs are for instance unable to order opt-out forms in bulk.

The BMA has called on the department of health to suspend the SCR rollout as patients are not receiving the information they need to decide if they wish to be included on the SCR.  London GPs have also been unenthusiastic.

Legality

The SCR is vulnerable to legal challenge.  In a 2009 report by the Joseph Rowntree Reform Trust the SCR was awarded an ‘amber light’ indicating ‘the system demonstrates significant worrying failings and may fall foul of a legal challenge’.  European law requires that systems which store sensitive personal information such as medical records either have the free and informed consent of the data subject, or be based on specific legal provisions that are sufficiently narrow to make their effect foreseeable.  Such provisions must also be proportionate and necessary in a democratic society.  The SCR would appear to fall short of these stipulations.

There are doubts about whether it will be possible for people to have themselves removed from the SCR.  The DoH has been quoted as saying that it will be impossible, on the basis of medico-legal considerations and cost, to remove someone’s record once it has been entered.

Effectiveness

I am unaware of any evidence that the SCR will dramatically improve care.  For some people, making relevant medical information available to emergency medical staff may be very beneficial and for a few possibly life saving.  However for the vast majority of us it will be of little or no use.  For a discussion of whom it may help click here.

In 2005 Amanda Campbell, died from septicaemia despite having been assessed by eight doctors.  During a Today programme interview Dr Eccles, medical director for Connecting for Health, mentioned her case as an example of where centralized records would have been of benefit.  Whilst centralized records might have been useful this account suggests that her avoidable death was at least as much a result of the substandard medical care that she received, something outside the remit of a centralized records database.  The SCR does not work abroad or even work across the whole of the UK, as Scotland has a different system.  And relying on a single system means that errors can be propagated;  I would not recommend that anyone leave their medical alert bracelet at home.

Cost

Originally expected to cost £2.3 billion over three years, in June 2006 the total cost of the NHS National Programme for IT was estimated by the National Audit Office to be £12.4bn over 10 years.

Links

SCR opt out form

The Big Opt Out – NHS confidentiality campaign

Database State – a super report (if you happen to think this sort of thing is interesting) about the failings of UK Government IT projects

Henry Porter on the SCR writing in the Guardian’s Liberty Central

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Addedum 26 April 2010

Over 1000 people have read this post since I published it.  If it changed your mind, or even if it didn’t, I’d really like to know your story.  Please leave a comment below.

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21 Responses to “NHS Summary Care Record”

  1. Social comments and analytics for this post…

    This post was mentioned on Twitter by psychiatrist: Is blogging – NHS Summary Care Record http://bit.ly/9cWULV

  2. PJ says:

    I’ve elected to remain opted in (although I do have a very dull medical history). In my everyday practice on acute medical and surgical takes I have seen many patients who would have benefited from us having access to their SCR – most patients, surprisingly I think, seem to know remarkably little about their past medical history, particularly their surgical history, and in my trust it takes a day or more to get a patient’s medical notes (the notes stored for that trust only, anything from elsewhere is very difficult to obtain, including GP data) assuming they haven’t been misplaced or lost somewhere on the way. I can think of at least one death in the last few months that might have been avoided if details of past medical history were known.

    I have no doubt that, as with many other big government IT projects, there will be massive cost overruns and huge useability issues, but in theory I think it is a good idea.

  3. Louise says:

    Maybe not so good for those of us with psych histories. A mate had a common procedure [hernia repair] but because they knew he had history of self injury [NO recent scars] he was forced to keep his bedside light on all night and be closely observed! This was completely uneccessary.
    I’m not so sure the most relevant info would be conveyed in an emergency when you have psych history. For example my own psych history is utterly irrelevant if I were in A&E and unconscious, the priority should be to remove my RGP from my transplanted cornea because if that were left for a prolonged period it would damage my only ‘good’ eye. This info wouldn’t be conveyed, and other psych servce users have found their psych history can get in the way of general health issues from diagnostic overshadowing to essential info not being conveyed.
    I want to opt out because I don’t trust NHS IT systems as far as I can throw them but then I am faced with a dilemma because I’m not a “normal” patient, you never are when you have psych history, there can be a credibility problem so if I opt out this could be viewed suspiciously rather than as personal choice. So what do I do?!
    As for medics needing info in emergencies I already carry around essential info so even if I were unconscious and unable to speak for myself any paramedic or nurse would look through my purse/bag and find it

  4. Daisy says:

    I got sent a letter from the NHS yesterday telling me that if I wanted to opt out I’d need to send back a form by freepost in order to request the ‘opt-out form.’ I will then need to complete this form and send it back.

    Why didn’t they just send it in the first place?

    Anyway, loads of my friends are doctors, and we are all from the Facebook ‘check up on our friends’ generation. As if I was going to let them access my info!!!!

  5. Alan says:

    I received my summary record info today and have just gone through the rigmarole of opt out. Why do they not assume many of us will be cynical about their capacity to manage our information safely and just enclose an opt out form.
    In principle this appears to be a good idea but the devil is in the implementation and Governments of whatever hue have found successful implementation of secure IT networks beyond them. It’s bad enough now how little privacy one has at the GP’s counter or in hospital without hackers, cleaners and sundry others having access to our intimate details as well.

  6. David Webber says:

    I asked my GP for advice about SCR’s and he said “Well I’m opting out – that tells you everything doesnt it ? I dont mind my medical history being known by other medical parties but I’m not convinced it will stay that way”

    Incidentally I live in Dorset and the Dorset NHS website has recently been hacked into and messages left on it in Arabic.

  7. Steve HH says:

    Had already decided to opt out. Any database under Labour is too Orwellian for my trust.

  8. Andy says:

    GPs are unable to order opt-out forms in bulk – is that cos theyre too mean to photocopy them ? or just another excuse from this group with a vested interest in not sharing data.

    Of course a Google search reveals that the form is available
    http://www.nhscarerecords.nhs.uk/options/optoutform.pdf
    One reason that it is not included in the pack is a) the advice from the NHS is that it is more beneficial if you do not opt out
    b) the cost of yet more paper

    The Arabic hacking incident mentioned above was actually of a website hosted for a Mental Health Trust in Dorset, and not NHS Dorset.

    And finally, the article suggests the costs, these quoted are for the whole NPfIT programme, of which SCR is only a small part. I don’t know what it cost, but in my view it is one of the more worthwhile parts of the overall expensive programme.

    But when did anyone ever check their facts ?

  9. David Webber says:

    Just to put the record straight re the Hacking. This was from an article in the Bournemouth Echo headed “Iranian Hackers take over Dorset NHS site” – link

  10. Andy

    Here’s the nub of it. The Summary Care record is a very large database of individual health information. This sort of information is very sensitive and most people would wish it to be private. The SCR proposes to take this private information and make it nationally available. This has some advantages but I argue above these do not compensate the various drawbacks.

    If, like me, you consider that health records are private, then people should have some say in whether they are put on the SCR. However the government has chosen an ‘opt in’ system. You argue that this is because the NHS is advising that the NCR is beneficial. As I argue above this ‘benefit’ is hardly an open and shut case. And surely the individual fundamentally is best placed to decide what is and isn’t beneficial for them? In something this important the NHS should sure place a fair choice in front of people, not the half choice currently proferred.

    If the NHS is to continue with the ‘opt in’ model the very least they could do is to make it as easy as possible for people to opt out. You suggest that this is sufficiently catered for by the form being on the internet. But what about people with no internet access? There are very many reasons that patients may find it harder to opt out than you imply (see link below)

    I take your point about the cost not being simply for the SCR. This however is very clear from my post. There are no figures of which I am aware on the cost of the SCR. The NPfIT has hardly been a great success thus far. If the SCR is its biggest success then I’d like my money back.

    I look forward to your reply regarding the mental health trust in dorset rather than the NHS trust. Perhaps
    there were two attacks?

    NPfIT tag on the register

    Addendum 26 May 2010:
    If you’re not online these days you’re a second-class citizen Catherine Bennett Observer Sunday 16 May

  11. Mat Barrie says:

    I can’t follow the logic of opting out. You can access your banking detailing anywhere in the world, why should your medical history be any different? It strikes me a lot of GP’s view this data as ‘theirs’ not ours & so are against this loss of power.

  12. YOU can access YOUR bank details anywhere in the world.

    If 1m people were able to access your bank records how would you feel?

  13. David Webber says:

    I’m not sure if youve got the point mat. You can access your banking details from anywhere in the world but its not legal for say the Police,The Department of Work and Pensions, Social Services etc etc – or any Government Department – to do so. But if its all on a giant government database then whats to stop them – not to mention hackers getting hold of sensitive info on some peoples health records and useing it to blackmail them etc.
    Ive opted out as I dont trust my medical info to be available to all and sundry. I’d rather it stay with my GP surgery where I can access it myself if I want to.

  14. Cheryl says:

    I received my letter and thought – what’s to stop anyone hacking into my GP computers and getting all my medical details – the information for the the Summary Care Record is only medications, allergies and bad reactions to medication in the past. Hardly the medical record and a lot of people keep a list of their medication on them in case of an accident.

    If you don’t have an SCR, A&E call the surgery (when its open) and they fax information over to the A&E department – that’s confidential isn’t it or they tell whoever called over the phone all they need to know – again very confidential. Surely if you suffer a stroke in the evening, early morning, at the weekend, you would want this information readily available rather than wait until your surgery is open. Its only information given to A&E already, only its quicker and therefore, better for the patient

  15. David Webber says:

    All well and good Cheryl if whats on your medical record is ordinary basic stuff. But what about those people who say have had an alchohol problem or a drugs problem or depression or a sexually transmitted disease etc etc.
    Then perhaps that was many years ago and they have turned their lives around now- but it will all be on a giant government database. They could be open to blackmail and so on if theyve kept it quiet particularly if they are now in a position of prominence.
    As has been stated in the article the government of the UK hasnt got a good record of keeping information safe. Everything on a giant central database is very different to it being on your own GP’s computer.

  16. Cheryl says:

    I understood the only information on the SCR is 6 months medications, 6 months discontinued medications and 18 months Acute medications, nothing from our distant past will be there. Its not really a problem as no-one is making us have a Summary Care Record, we can always opt-out.

  17. NHS Temp says:

    How many administrative temps, agency nurses and doctors and NHS Bank staff are there in the NHS?

    Passwords are not changed every time an agency worker leaves and a new one joins. The audit trail will only show the name of the person who had that password and they’re probably back in Australia by now.

    Every single NHS Trust, PCT, clinic and hospital I’ve worked in has handed out passwords from departed workers so that I can access patient records.

    Are records input correctly in the first place? I regularly find inaccurate records on the database. In this some Trusts are much, much worse than others. Does anyone cross-check the data entry against the original records to ensure that it’s accurate? Even do an ad hoc spot check of a sample of patient records? In my experience, never.

    The big cost-costing squeeze is coming. Already agency workers, clinical and non-clinical staff, are trying to do full-time jobs in part-time hours. It’s only going to get worse. Every Trust has a Records Management Policy, a Patient Confidentiality Policy, a Data Quality Policy, an Information Governance Manager, a Caldicott Guardian and in my experience none of these make any difference to the security of a patient’s data. I’ve noticed that Managers often don’t want to rock the boat by appearing to be cracking down on data accuracy or confidentiality. Supposing they decided that there would be no sharing of passwords, no PC’s left logged on overnight, etc who would police that? It’s not possible, they don’t have enough time.

    Who has the time to properly train staff in these policies, especially agency staff, and look over their shoulder to ensure they’re not looking up the wrong records.

    Most celebrities and VIP’s, however famous, had an NHS GP at one time and their medical records will soon be available for viewing on a centralised database for the rest of their lives. For the Rest of Their Lives.

  18. Cheryl says:

    I have been to a Drop-In Session and all this has been explained – please make sure you attend any Drop-In Session your PCT arranges to get the correct information.

    Passwords wont be used – SmartCards with role based access will be used. A Summary Care Record can only be accessed with your permission. Admin staff etc wont be able to look at a Summary Care Record, only Doctors and not Doctors on the Ward, only in A&E. If you don’t have an SCR, they telephone the surgery to get the information, and guess what, they don’t ask your permission to telephone the surgery for your information.

  19. Bob Lindsay-Smith says:

    Hi, I have been following this post hoping there would be some change from the new government (which I broadly support in other areas), but their computer appears to say no!

    The website yourfreedom.hmg.gov.uk (no www), which allows us citizens to suggest what regulations we would like to be repealed, has attracted a few comments on this. If you search for ‘NHS Database’ you should find the contribution from Dr Neil Bhatia, who makes similar points to those made here. Further comments on his thread might conceivably make a difference.

  20. Cheryl says:

    The information on a Summary Care Record is Recent Medications, Allergies and Adverse Reactions to a medication in the past and that’s it.

    It looks forward, not backward, this means if you had a problem in your youth and had to take antibiotics, it wont be on your SCR. It means if you’re not on any medication there wont be anything to see. There is no personal information, just what medication you are on, if you have an allergy or if ou have had a reaction to a medication in the past. That’s it.

    This information is given out freely when A&E ring the surgery without the permission of the patient, its faxed through to a fax machine sitting somewhere in A&E without the permission of the patient or its relayed over the telephone where anyone in the surgery can hear again without the permission of the patient – but apparently that’s OK.

    It’s information which is given out anyway. Is it the Summary Care Record that’s the problem or the fact that patients have to opt-out of having one?

  21. John Burton says:

    The yourfreedom.hmg.gov.uk website mentioned by Bob Lindsay-Smith has been closed down by the government, but an active archive of all the public’s submissions can still be found on http://www.govyou.co.uk for those interested. Check out the NHS tag.

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