BMJ article: Patients must have control of their medical records

The cover of the British Medical Journal includes my article titled “Patients must have control of their medical records”:

Imagine an elderly patient with heart disease, arthritis, and a history of depression who needs social care at home. These are the patients who generate most of the work and cost in today’s developed world health systems, and usually their care is fragmented. Our hypothetical patient sees two specialist nurses as well as different general practitioners at her local practice. She sees three sets of specialists, two of them at different hospitals, and she is to have a cataract removed at a third hospital. A carer comes every day, and she depends heavily on her three sons who share her care and live in different parts of the country.

Everybody accepts that this patient will have better care, and that costs to the health system will be lower, if her care can be integrated. But how can that be done? Well, one way—and perhaps the only way—is through the patient having electronic records that she controls herself: a personal health record.

A personal health record is different from an electronic patient record in that the patient controls it rather than an institution.

BMJ analysis editor, Tessa Richards, cites the article in her blog, as well as mentioning the Patient Information Forum report that had highlighted PKB:

A new overview on access to health records prepared by the Patient Information Forumsheds 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.

This is part of the BMJ’s wider coverage about patient-controlled records:, which mentions PKB alongside other examples of patient control in the Netherlands and USA:

Every general practice in England will have to offer patients online access to their care records by 2015, according to the government’s information strategy for the NHS published in May.1 Currently only 1% do so. As the Department of Health acknowledges, this represents “a challenge to the culture and practices of some health and care organisations and professionals.”

But advocates of patient access to records now want to go further. They want patients to control their records, with the right to decide who may access them. As the information record is about the patient, the record is his or her property, they argue. Patient controlled records bring extensive benefits, they believe: better informed, more engaged patients; a more mature doctor-patient relationship; shorter consultations; fewer errors; and a means of integrating services—in short, that holy grail of modern healthcare, improved outcomes at lower cost.

This may sound counterintuitive to many doctors. Records could contain information that might alarm or even harm a patient, they respond. They may be written in jargon or—for the sake of clarity—in a frank way that patients find offensive or misunderstand. Patients might deluge doctors with trivial inquiries. Although the BMA believes that patients should have access to their records, it remains concerned about security.

Historically, medical records have been regarded as the property of clinicians or their institution. And although patients in the United Kingdom have had the right to read their paper records since the 1990s, few choose to do so. But accessing records online is much easier: it may stimulate demand for access and, with it, control.

You can read the full text of my article on the BMJ web site, or download the PDF.

2 comments

  1. “The cover of the British Medical Journal includes my article titled “Patients must have control of their medical records”:”

    … erm, no it doesn’t. It has the title of Peter Davies report on the cover, which is the featured article. Your article is on p34 under “Personal View” and is not mentioned on the cover as you suggest.

    That said, congratulations on your article being published in the BMJ, it’s a great article nonetheless.

    1. Thanks Rose, it is indeed great to be published in the BMJ. At the end of last year I approached the BMJ saying that the current debate about when to give patients access to the medical record was missing the point which is that the data belonged to the patient, and they should control it. As a result they asked me to submit an article, and in parallel had Peter Davies interview me about PKB, alongside other efforts at patient control around the world.

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