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Tessa Richards: Personal information empowers and its shift to the people makes sense

20 Aug, 12 | by BMJ

Tessa RichardsGiven that health is our most precious commodity it is odd that many of us know so little about it. Part of the reason is that we are not used to seeing and thinking about our own health information, for most us don’t get much of it. But things are changing. The NHS has pledged to give everyone online access to their GP medical records by 2015. Controlling your own health record may become an option too. The vision is to turn us all into engaged, active, co producers of health and self managers of disease. If only it were that simple…..

When illness strikes, or we, or someone in the family, face the prospect of living with chronic disease, as many of us do and most of us will, it can be hard to square up to it. We need to acknowledge and understand what is undermining our health, gain insight into how illness effects us personally, and work collaboratively with health professionals to mitigate its impact. Acquiring health literacy is a slow and sometimes harrowing process.

Access to personal health information will help, but it’s not enough (BMJ 2008;337:a1786). We need to be able to interpret it, set it in context, and have sufficient technical and professional support to use it to inform our decisions and use services appropriately. We also need health professionals to emerge from the dark ages, and recognise that all patients, even the most feckless among us, bring expertise and learning points to the table, along with their problems.  Some do of course, and we should listen and learn from their experience (BMJ 2012;345:e4905)

The government’s new IT strategy has been broadly welcomed and can’t be faulted for its aim: “putting all of us in control of the healthcare information we need,” and realising “the enormous potential of information to improve our care and our health outcomes.” But it has attracted some criticism. Mostly for being short on detail and time lines, and downplaying the technical and financial barriers to its implementation. What it is explicit about, however, is the challenge of achieving the necessary culture shift in professional and patient mindsets.

A new overview on access to health records prepared by the Patient Information Forum sheds valuable light on many of these issues. Based on a literature review and public and professional consultations it describes developments in the UK, US, and Europe (both are well ahead of us), unpicks the different models of access to electronic personal health records, analyses the pros and cons and barriers to providing them, and outlines best practice in a movement that is in rapid evolution.

Models range from “read only e-access,” via “real time unfiltered, read and annotate” to “full fusion of personal health information.” Here the wall between GP and hospital records has been broached and patients hold, and are in full control of all their health information and who gets access to it. It’s cogently argued that this is the only way to achieve integrated care (BMJ 2012;345:e5575) and reduces the likelihood that confidentiality will be broken;  a growing concern with e records. Interestingly, in a recent BMJ online poll 58% of responders voted in favour of giving patients control of their records, out of a total of 667 votes.

One of the most powerful messages in the Patient Information Forum report is what patients gain from holding their own records and support to use them. The anecdotes are compelling. So is the insight about who stands to gain most from holding them. Counterintuitively, it’s not only globe trotting executives, tourists, peripatetic 18- 30 year olds, pushy middle class patients, and those with chronic disease. With the right support—and this is crucial, the old and sick who are being cared for by family and friends, people with disabilities, and those from ethnic minorities can, it is suggested, reap comparable benefits.

So is Shangri La at hand? Can the NHS health service deliver on its information strategy? Will the results of ongoing research reinforce the message that engaged and empowered patients can reduce costs to health systems struggling with the dual burden of rising rates of non communicable disease and shrinking workforces?

Let’s hope so. Meanwhile, incentivising general practices to provide patients with the information they hold and support to use it, should spur things on. And the process needs to be two way. Letting patients contact practices by e-mail as some but not all do, would be good. Similarly, attention to the basics is important. Recommended hospital policy to routinely copy patients into letters sent from consultants to the GP is still not followed by all doctors. And while we wait for the vision to be realised, patients, who currently lack access to personal information and may well regard control of it as a bridge too far, should be helped to engage. If they ask for a printout of their records, and a list of patient organisations and local support groups they should be encouraged, not made to feel as if they were asking for the moon. Patients can learn as much from each other as they do from health professionals and fostering that is no bad thing either.

Tessa Richards is the analysis editor, BMJ

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  • Huw Llewelyn

    But information will only
    empower if it can be understood properly. I’m a
    highly experienced hospital doctor but I feel very uneasy when I open a patient’s
    notes for the first time. I really need
    to know quickly what is being done for the patient, for each thing that is being done,
    what is the diagnosis (or possible diagnoses usually) and for each of these the
    evidence – the presentation, supportive findings and the latest marker(s) of progress.
    I write this down in a summary and
    patients, nurses and medical colleagues are usually astonished at what is
    revealed (and what is missing).
    It does
    not take me long, but unless the patient, nurses and doctors that I advise have
    a clear understanding of the kind provided by such a summary, then they will
    not fully understand the contents of the record and my advice in that context. I teach students and doctors to give their
    clinical opinions in this way in the Oxford
    Handbook of Clinical Diagnosis and recommend the approach to patients in the
    website ‘Understanding medical decisions’ [http://www.transparentdecisions.org.uk/]. Information will only empower if we understand it properly and I think that all patients should have such a ‘patient’s evidence’ based summary.
    Huw Llewelyn
    huw.llewelyn@orange.net

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