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The need for Patient Accessible Medical Records

June 25th, 2010 |  Published in eHealth & Assisted Living  |  2 Comments

I came across an excellent report on homecare and chronic disease management this week, produced by Pam Garside of the University of Cambridge for Healthcare at Home.  Entitled “Lessons from the US” it looks at homecare practice in the two countries.  Healthcare at Home are a commercial organisation with an interest in promoting home care (which you probably guessed from their name), but the report seems to be refreshingly clear independent.

It compares and contrasts the use of remote monitoring technology in the US and UK to support patients at home, both in terms of release from hospital and to manage long term chronic conditions.  Its main conclusion is that the UK is far better positioned to benefit from this than the US.  But there’s one proviso – that the UK needs to put in place a system that allows patient records to be shared between those involved in care, including the patients themselves.

The report acknowledges that this is currently lacking in the UK, but predicts that this will be remedied during the course of 2010 by the introduction on Summary Care Records (SCRs).

Pam’s obviously not spoken to the British GP’s Council.  This week their chairman – Laurence Buckmann, made a presentation to the Local Medical Committee’s Conference calling for SCRs to be scrapped, ostensibly because they require a patient to opt out, rather than opting in.  It’s part of an ongoing campaign against SCRs by the British Medical Association (BMA) that makes Luddites look progressive.  And which seriously threatens innovation within the NHS.

The Summary Care Record scheme is almost always prefaced in the media with the adjective “controversial”.  It’s not because patients find it controversial, but because of a well publicised storm that has been whipped up by members of the medical profession within the UK.  Ostensibly they fear for the security of patient data; their opposition is on the pretext that patients should opt-in, rather than being automatically included, with the option to opt out.  One would have thought that fifty years experience of getting patients to sign organ donor cards might have suggested that this would not work.  Look a little deeper and you see the underlying slyness.  Taking this approach is almost certain to ensure that only a small percentage of the population signs up, so that SCRs never achieve the critical mass to be successful.   It’s a cynical attempt to lobby for failure and to preservation the status quo.  Sadly, the new Government appears to have been sufficiently fooled by these views to call for a review of the scheme

Aside from their campaign to delay the project on the basis of security doubts, there’s a steady drip feed of comments suggesting that having accessible records will not provide any benefit.  On the British Medical Journal blog we hear that they are “unaware of any evidence that the SCR will dramatically improve care”.  A well publicised report from University College London reports “no direct evidence of an improvement to patient safety although findings were consistent with “a rare but important impact of the SCR on reducing medication errors”.

The UCL report, sensitively and non-provocatively titled “The Devil’s in the Detail”, highlights that “as of 1 March 2010, of the approximately 8.5 million people who had been sent information about the SCR, 0.65% had opted out. 1.2 million SCRs existed and 14,266 had been accessed.”  It observed that fewer people had registered than had been expected, explaining this on a “clunky” interface and complex registration process.  They failed to observe that a contributing reason may have been a vocal campaign by GPs, backed by the BMA, for people to boycott it and the fact that most local GP surgeries had not signed up, so you couldn’t actually set your SCR up.

Even where SCRs were used they experienced “wicked problems”, (I love the emotive use of words in this report – Wicked Problems is actually a chapter heading), foremost of which was tension over defining what data should be included.  In my experience, SCRs have been hampered by a largely academic debate over what they should contain.  Rather than trying them out and using an evidence base to see what is useful and what not, deployment is being pushed into committee rooms, whilst patients are left with a healthcare system that relies on shuffling mountains of paper around and repeating data inputs multiple times. 

What was also striking in the report, and I don’t know whether this is following practice or not, is the absence of patients from the design, governance and implementation networks.  The report claimed that it initially tried to measure whether the use of the SCR had contributed significantly to patients’ satisfaction, but abandoned this because they found it impossible to judge.  In other words it’s the same old story – Doctor knows best.  And at the point that the patient does get involved, Doctor tells them not to use it.

Once outside the GPs grasp, the report becomes more positive.  Amongst nurses, “the highest users of the PDA device were, unsurprisingly, those who considered themselves confident with the technology and were keen to innovate. The PDA aligned with such nurses’ identity and values (as a mobile workforce, they saw a mobile technology as very appropriate). Working in an organisation where they were not routinely given a simple mobile phone, they felt valued and rewarded when given the more technically sophisticated PDAs. High users of the PDA commented that they felt it increased their credibility in the eyes of the patient, partly because they could show the patient his or her own record at the bedside. It is possible, but only a hypothesis at this stage, that a demonstrable link with the main NHS records system made the nurses seem more a part of the trusted NHS system in the patient’s eyes.”

At that point it’s worth jumping across to the Healthcare at Home report.  Having compared US and UK practice, it concludes that shared health records are absolutely vital to its success.  It’s setting its hopes on the availability of SCRs in the UK to replicate the success in managing chronic disease management that it’s seen in the US.   They highlight the experience of the Veteran’s Association, which has used home telehealth, combined with case management for a number of years.  They’ve seen a 25% reduction in bed days, 20% reduction in admissions and an 86% patient satisfaction rating.  As a result they’re scaling up their approach to reach 110,000 patients by 2011.  (UCL please note – someone knows how to measure patient satidfaction.)

One of the most important messages this report brings back is the need to “Make every interaction count”.  It observes that where there is real benefit, particularly in a fragmented delivery system, such as is case with hospital, GP and social care in the UK, that we move from focussing on the particular function of each professional delivering an intervention to joining the dots, where each intervention can reinforce the others.  That means messages from previous visits can be constantly reinforced to help cement a health regime, whether that’s taking medication, appointment reminders or health measurements.  What they all need is the provision of consistent information, both to the patient and to each health professional they interact with.

Experience from California shows that in a lack of accessible medical information compromises quality and cost, and that the availability of data across organisational boundaries, as well as between clinician and patient, improves care (see the report for references). 

It is difficult to understand the antagonism of the BMA and GPs towards sharing information, other than as an attempt to maintain control of a hierarchy that owes its form to a Victorian Guild structure rather than a modern approach to evidence based medicine.  I think that many nurses understand the benefits.  But the higher you move up the professional chain, the more reluctance there is to accept that the patient is part of the solution, rather than being the raw material of the day job.

Sadly, it appears that the GPs have the ear of our new health minister – Simon Burns.  The Government has announced that they will ring-fence health spending, and it looks as if they’re also ring-fencing the ingrained prejudices of those within the NHS.  I’ve often referred reader to Clayton Christensen’s excellent book analysing the healthcare industry – the Innovator’s Prescription, and I’ll do so again.  He argues that the mix of healthcare professionals we will need in the future is different from the mix we have at present.  We’ll need fewer specialists, those we have will need to be better trained in intuitive medicine in a multi-disciplinary team environment, and that the work done today by general physicians will be taken over by nurse practitioners.

It is telling that in the UCL report, this last group was the one who found most benefit in SCRs.  That should have been an important part of the report’s conclusion.

In conclusion, if you happen to be Simon Burns, or someone who talks to him, or advise him, please realise that we do need Summary Care Records.  If you question why, go out and read the Innovator’s Prescription and then read the Healthcare at Home report.  Don’t listen to what the profession may be telling you – their agenda is one of survival.  Look at healthcare with disruptive eyes and think about the patient.  Ask why a GP has a stronger claim to ownership of that data than the patient themselves?  It needs to be accurate and trusted, but it also needs to be shared.  Patient accessible records are a vital component of giving people the joined-up healthcare system they deserve.  And it might even make it cheaper.

2 comments ↓

#1 James Elsdon-Baker on 06.25.10 at 3:26 pm

“Ask why a GP has a stronger claim to ownership of that data than the patient themselves? It needs to be accurate and trusted, but it also needs to be shared.” – The SCR give ownership and control of medical records to the DoH not the GP though. Access is then allowed for a number of statutory reasons in the ‘public interest’.

Core to any medical treatment is the principle of confidentiality, as a patient I should have to give my consent before the most sensitive medical data regarding my person is shared. An opt-out system for consent does not adequately ensure that consent has been gained as highlighted in the independent UCL report.

There is a campaign but it’s not just led by the BMA, but also public campaigns such as the Big Opt Out and NO2ID who represent a wide cross-section of society. The fact that such a campaign exists should alert you to the fact that many people are really not very happy and quite upset that their privacy is being trampled all over.

#2 Nick on 06.25.10 at 9:35 pm

There’s a rather more complex contract going on here though, which ultimately comes down to how much we want to, or can afford to pay for our healthcare. I’ve been fortunate in that I’ve yet to have any major illness that has required me to use the NHS in earnest. On those occasions where I have, I have no issue with the treatment, but a lot with the organisation, which has involved repeated appointments with GPs, consultants and staff, all of whom treat each meeting as if there had been no precursor. My parents have used it much more and it frustrates me to see the waste in their time and health where information has not been passed on, resulting in incomplete or missing prescriptions, diagnoses and a lower than necessary quality of life. Almost all of which is down to inadequate use and sharing of information. From talking to many people, I don’t believe that this is an uncommon occurrence.

Hence the contract we need to consider. I think most people want the best healthcare they can have for the taxes or money they pay. There is increasing evidence that the best way to achieve that is by better sharing of information. If we go for the Fort Knox security standard, we’re unlikely to get there before the NHS goes bankrupt. So the question is “where is the compromise?”. My personal opinion is that given that choice, most people would go for the lower security / better healthcare option. But that is being strongly resisted by bodies like the BMA. I would rather see that brought forward, with safeguards and processes to address any shortcomings, than labour on with business as normal.

If people have strong feelings about their medical data, they can opt out with their wallets and go private. And then see if that’s any more secure? I suspect they’ll find just as many records left on the back seats of taxis or thrown out with the rubbish.

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About Creative Connectivity

Creative Connectivity is Nick Hunn's blog on aspects and applications of wireless connectivity. Having worked with wireless for over twenty years I've seen the best and worst of it and despair at how little of its potential is exploited.

I hope that's about to change, as the demands of healthcare, energy and transport apply pressure to use wireless more intelligently for consumer health devices, smart metering and telematics. These are my views on the subject - please let me know yours.

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