The Economist has featured PKB in its magazine today. I felt sorry for the journalist writing the story as there was so much detail and NHS bureaucracy for him to digest. But I was impressed at how much he learned and how quickly he did so. Between each phone call he would do a lot of research and come back with perceptive questions. If you can’t tell already, I do love the magazine.
Medical records: Patient revolution
The public get the chance to manage their own medical files
Nov 19th 2016 | From the print edition
THE news that someone in the National Health Service on November 14th had e-mailed all 1.2m employees, leading the entire system to crash as people clicked “reply all” to complain, will not have surprised those who have followed the woes of IT in the NHS. Efforts to reform the service’s technology, and to manage data generally, have proved as embarrassing as the system itself. “Connecting for Health”, an attempt to impose a national IT system, had to be scrapped in 2013, at a cost of £10bn ($12bn). Care.data, a recent initiative to copy records from local surgeries to a central database, has also been abandoned, wasting £8m. Although people shop and bank on the internet, most do not yet manage their health care online.
Now, in search of efficiencies and realising its approach to IT is floundering, the government is trying to allow a more bottom-up approach. Since last year, all general practitioners (GPs, or family doctors) have been obliged to allow patients to view their medical records online. From 2018 the same will be true for hospital records. Some private software companies are also stepping in to push for change.
There is no unified IT system across the NHS. Many hospitals do not even have a full electronic record of patients’ treatment. GPs all use one of four systems but they are not necessarily linked to hospitals. Basic details of each patient, known as a summary care record, are stored centrally. If a patient is brought to hospital unconscious, doctors can usually get access to it, but it is not always useful.
Healthy folk do not notice this lack of co-ordination (only a tiny proportion of people have accessed their GP records online). But those with chronic conditions get frustrated that records of their multiple appointments with different health-care professionals are not accessible in one place.
One company pushing to unify access to medical records is called Patients Know Best (PKB). It was founded in 2008 by Mohammad Al-Ubaydli, the son of Bahraini immigrants, who trained as a doctor at Cambridge University but was more interested in technology than in medical practice. His firm is not an electronic records service, but a tool that stitches such records together. Patients authorise their doctors to write in their PKB file, thus creating one centralised record. “We are the Facebook of patient medical records,” says Dr Al-Ubaydli, adding that PKB does not sell its customers’ data as Facebook does.
He calls this the “Reformation moment” for the health-care industry, in which “the laity get access to their records and can interpret them for themselves”. He is not alone. “Why isn’t everyone doing this?” asks Sam Smith of medConfidential, a medical-data privacy group. Mr Smith is also excited about the way the new companies approach consent for data use. By 2020 the government will require that patients give consent for any use of their data. Rather than the NHS approach requiring patients to opt out if they do not want their data to be shared, in using PKB patients can explicitly opt in if they are happy to pass their data to researchers.
The need to reduce costs, along with the legal requirements for access to records, has made hospitals pay attention to the idea of how to manage data. In countries with national health services, hospitals are glad to be linked up with primary-care services because it saves them money and improves safety. PKB is paid by each hospital that uses its services. But “If you offer that to an American hospital, they will ask: ‘Why should I give my customer data to a competitor?’” says Dr Al-Ubaydli.
The software is being used at various sites, including by cancer patients in Sussex and children at Great Ormond Street hospital in London. Zoe Warwick, a sexual-health consultant based in Plymouth, uses it for 350 patients with HIV, to convey test results and co-ordinate their treatment. It has already saved her department time and money. “It could revolutionise the NHS,” she says. “If I could roll this out across the whole trust, I would.”
The problem is that her NHS trust, like the majority, is constantly in the red. There is no space to stand back and look at what needs changing, she says, because managers are so busy fighting fires. “It needs a brave leader to stop the system, change it, then start it up again.”