Patients Know Best in the Guardian: Better access to patient records is essential to make the NHS a safer place

Two weeks ago one of our patients, a 59-year-old woman with a diagnosis of vascular dementia and epilepsy, living alone with the daily support of carers, had been treated in hospital after an apparent fall. She was back home, but required further supplies of her new medications.

Wynn, her domiciliary carer, came to the pharmacy to collect the customised monthly dosette trays, and she told us how much better her client was on the new tablets after coming out of hospital. The alarm bells sounded. The pharmacy technician, who had painstakingly prepared the trays, cursed. Once again, we had been unaware of alterations to treatment.

New prescriptions were requested from the GP surgery, but they knew nothing of the hospital admission, and they had not received a discharge summary. The hospital was contacted, and the following day a discharge summary was faxed, but it did not indicate which medications had been stopped or changed. The junior doctor who had written the summary could not be found, and the weekend was upon us ??? closed surgery, no prescriptions and a patient about to run out of essential medication.

So, this morning, Wynn has brought in the new tablets and, using the information on the labels, we have dispensed an “emergency supply”.

Research has consistently shown patient safety is threatened during hospital admission, especially when through A&E and discharge. Up to 70% of patients do not receive their proper medication. Elderly patients, because they take more tablets, are the most affected.

Rachel Urban, a research pharmacist whose PhD thesis investigates communication through admission and discharge, cites a young, blind, diabetic man recently denied insulin all day because the ward was waiting for information from his district nursing team. Having failed to contact the team, they finally consulted the patient, and he promptly described his insulin regimen. Urban’s research indicates that to ensure effective communication the patient must be given a greater voice. This leads to the heart of the matter.

The medical merry-go-round of health professionals chasing one another for vital patient data, during which patients inevitably suffer, is a relic of an anachronistic health service designed for practitioners, not patients. But the government has decreed that by 2015 all patients will have access to their electronic health records. The Patient Information Forum, however, believes that such limited read-only access without any joining up between providers, is unlikely to improve outcomes. It aspires beyond this to a shared personal health records (PHR), putting people in control of their own data.

A PHR differs from an electronic patient record in that the patient controls it. Accessed like an electronic bank account, it can be shared whenever and with whomever the patient chooses, be it pharmacist, carer, doctor, or relative.

Dr Mohammed Al-Ubaydli, founder of Patients Know Best ??? a company providing PHRs to the NHS and others ??? argues that not only do they confer healthcare advantages but that they are a basic human right and arguments against them are “akin to denial of the right to vote”. Currently, 20 hospital departments use his company’s service.

Historically, patient records have been regarded as the property of doctors and their institutions. The riddance of such paternalistic dogma could be the very paradigm shift required to introduce the seamless integrated care that patients and health professionals alike would welcome. A British Medical Journal survey revealed 58% of respondents in favour of such changes.

Without Wynn, one of the lowest-paid workers in the NHS, our patient would probably have been readmitted to hospital. In the pharmacy, and not just on a Saturday morning with the rest of primary care apparently closed for the weekend, access to PHRs would make the NHS a safer place.

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