My illness, my record
Authors: Tessa Richards
Journal: BMJ (2007)

Few doctors would disagree that continuity of care matters, or that recent changes in medical training and practice have reduced it. Those who have escaped the frustration of dealing with a patient who has run the gauntlet of professional opinion and whose notes are “missing” lead a charmed existence.

Never mind professionals' frustration; what about the patient's? When illness, or fear of it, prompts a patient to consult a doctor, it's often a high stakes event. When the doctor has no access or limited access to the records, and the patient can't provide the relevant details, it's stressful to say the least.

I speak from the heart. As patient and patient advocate, my medical odyssey has taken me to more than a dozen hospitals and GP surgeries across England over the past three years. Not in pursuit of second opinions, but because of the way we live and the nature of our illnesses. My sons move between school and home; my father's chequered decline has necessitated several moves; I have been under six different medical teams. Our medical records have often failed to keep up with the itinerary. On occasions, decisions have not been optimum; partly, perhaps, because I have not always been able to explain who last saw whom, why, and with what result.

It's bizarre that in a world where we exchange all manner of personal information with mortgage lenders, insurance companies, even retailers, that we don't have streamlined exchange with health providers. Nor do we have ready and full access to our health records, which arguably contain our most important data. Furthermore, when we seek access we are often cast in the role of troublesome supplicant. The rhetoric may be of empowering patients and informed shared decision making, but the reality often belies this.

In the United States, everyone who enrols with Kaiser Permanente can access their personal health records on line. When patients move states, continuity is maintained through local Kaiser doctors who can access the common record. Other large US health providers and independent organisations also provide on-line personal health records. A few, it is fair to say, seem to use these for commercial purposes as much as patient partnership.

In the future, NHS Connecting for Health may surprise us all and deliver on its promises. These include patients' access to a limited “summary care record” accessed via www.HealthSpace.nhs.uk. Meanwhile the European Union's quest to put personal health records on common European health cards continues.

On a less ambitious scale, a raft of other initiatives are under way (www.ehiprimarycare.com). Last week the NHS department for quality improvement in Scotland launched a new, patient held national maternity record. The department's information officer, Fiona Dagge-Bell, describes this as the first country-wide patient held record. It's in paper form at the moment, and an electronic record will be introduced soon; this, Dagge-Bell says, will be a forerunner of the “cradle to grave” patient held ehealth records that are being developed by the Scottish executive.

Her view is: “It's high time people became their own health information brokers.” Brian Fisher, a GP from South London, agrees. He has been showing patients their paper notes for more than 20 years. Three years ago he developed a system with EMIS (the company that provides the software for about 60% of general practices in England) to enable his patients to access their full GP record in a kiosk in the practice's waiting room. The system has now gone on line, and he is seeking other practices to join a collaborative project on patient held ehealth records.

He acknowledges that sharing the medical record and promoting online discussion with patients is a “culture shift” that many doctors find worrying, and not all patients will want or be able to participate. But he is convinced that in time it will make the balance between doctors and patients less “lopsided” and medical care safer. In his experience, patients have not only welcomed access to their records but been liberated by it.

Currently the consumers and communication group of the Cochrane Collaboration is conducting a systematic review of randomised controlled trials of patient held electronic personal health records, and also a wider review which will include data from qualitative and unpublished studies. Next week the Nuffield Trust will publish a policy report that collates and comments on international experience of electronic personal health records.

Dr Claudia Pagliari, senior lecturer in the department of primary care in Edinburgh University, who is conducting the Cochrane review, emphasises the importance of learning from the full gamut of initiatives. She accepts that there are risks in giving patients the option to hold their own health records. “They may find out uncomfortable truths,” she says, “but research and accumulating experience suggests that most will accept the risks for the benefits it brings.”

When I asked Susannah Patton, media relations consultant at Kaiser Permanente, about published evidence on the impact of shared medical records she seemed puzzled that I should even raise the question. Kaiser's philosophy, she said, was that records need to be shared “so that there is a holistic view of the care given.” And who could disagree with that? The technology may need fine tuning, but its time has come.

The rhetoric may be of empowering patients and informed shared decision making, but the reality often belies this