One of the first health experiences of Matthew Gould, the new chief executive of NHSX, which is charged with digitising the NHS, was his wife with cancer being looked after in four places that could not access each other’s records. His wife created her own “interoperability” by carrying her records and papers with her to each consultation. The NHS can’t expect every patient to do that, Gould wryly observed.
Three months into his job, Gould has visited many parts of the NHS, seen marvellous innovation, but also the pitiful state of digitisation in some places. He visited a hospice where the staff had to ask each GP individually for access to the records of dying patients, only to be denied access by half, supposedly worried about flouting laws on data sharing. In another place the staff lined up a series of patients who said that they did not want to have to access anything electronically. It was a set-up, he said, but they made an important point.
Gould told these stories during his presentations and answers to questions at the Cambridge Health Network meeting last week, and I repeat them to show that he understands well what he is up against. Before arriving at NHSX Gould was the government’s director general for digital and media policy and the British ambassador to Israel. Wearing a sweater, he had a comfortable, almost cuddly, feel, different from the besuited, quasi-military feel of many senior NHS managers. You felt that he would listen to rather than lecture you, and he answered questions without evasion or defensiveness. I hope and presume that he has an inner toughness that means he won’t be crushed by the NHS machine.
Gould started his presentation by saying that the new NHSX is necessary. His predecessors who had had the task of “trying to ensure that staff and patients have the technology they need” had, he argued, been set up to fail as they didn’t have the powers they needed. They lived uncomfortably among the Department of Health, NHS England, NHS Improvement, and NHS Digital. Reorganisation means, he believes, that NHSX has the powers to get the job done—not, he repeated several times, that success is guaranteed. Indeed, her said that progress is likely to be patchy and slower than he would like.
The main requirement of Gould for NHSX is that it should make a difference to outcomes that matter. With that in mind he has set five missions for the organisation: relieve the burden on clinics and staff; provide high quality information to patients; ensure patient data moves seamlessly around the health system; improve safety; and increase productivity. He wants the everybody in the NHS, from the highest to the lowest, to benefit. He sees enormous opportunities in using high quality data to improve patient care and population health, manage the system, and undertake research. But he also emphasised that social care is as important as health care, and he won’t allow social care to be a secondary consideration as is usually the case.
Having expressed his vision, Gould said that he was well aware of the gulf between the “sunny uplands” of the vision and the reality in the NHS. As he talked to people working in the NHS the main thing he experienced was frustration—with slow log-ons, multiple passwords, and system that don’t speak to each other. One hospital he visited had 288 different systems that didn’t speak to each other, and his team met nurses doing cervical screening who had to enter data into two different systems while seeing a patient. As a newcomer to healthcare, he’d been shocked to hear the figure (very familiar to the old lags like me in the audience) that it takes 16-17 years in the NHS for an innovation to be fully implemented.
A theme of the evening was the necessity to do two things at once, and Gould wants NHS both to “build for the future” and “sort out the basics.” (He talked later of ensuring web-based access for all patients, but also of having a “non-digital offering that would be just as good.” I wondered how that could possibly be achieved.) One essential for the future is setting standards, a requirement for achieving interoperability, but also for ensuring the flow and usefulness of data. He didn’t think that there would be a single solution, and he recognises that implementing the standards is more difficult than setting them. For example, organisations within the NHS have for years been required to use the NHS number for patients, but may hospitals continue with their own numbers. He hoped that a mixture of regulation, persuasion, and incentives would encourage implementation of standards.
Gould has recognized, as every tech enthusiast must in order to succeed, that the technology is the easy part of digitising the NHS. The hard part is the people, the culture, the system, and the incentives.
When it comes to the future, Gould was very clear that it will not all be created by the NHS itself. He wants to build a platform on which entrepreneurs can build and spread all sorts of innovations. This message was popular with the large audience, many of whom were information technology entrepreneurs driven mad by trying to do business with the NHS. The NHS App is a good example of this philosophy. Gould thinks it important that the NHS has created its own app, but it would be a mistake for the NHS to try and create all the functionality of the app. That would crush the market, whereas allowing entrepreneurs within the NHS and outside to add functions will allow a proliferation of innovation and be better for patients, staff, the NHS, and the country. To that end the NHS App will expose APIs (API stands for “Application Programming Interface,” and exposing APIs means that other pieces of software can connect to the app. As with HIV, nobody ever spells out API) and data. Gould wants to create an “ecosystem,” where many sorts of enterprise can flourish.
One questioner complained later that there was no market for digital innovations. If you develop a new drug you know the route to market, long and arduous as it might be. But with digital solutions there is no clear route to market. Gould agreed.
Gould spoke as well of the “AI Lab,” which the government has created with £250m. The money will be spent scaling mature innovations that use artificial intelligence and creating a regulatory environment, which following Gould’s philosophy will allow others to develop and spread innovations using artificial intelligence.
There is within the NHS, Gould has observed, lots of innovation but little scale up. (I’ve been at several meetings where people have said that there should be prizes not for innovation but for “followership,” where people adopt other people’s innovations; spontaneous applause always follows because people know the problem of too much innovation too little scale up.) Barriers to scale up include confused guidance (particularly on data protection) and misaligned incentives. Gould said how the chief executive of a major London hospital had said he was awash with innovations, but couldn’t introduce them all because he would bankrupt the hospital—presumably by reducing the admissions for which the hospital is paid.
NHSX has, Gould conceded, a massive agenda, and the first questioner asked if he was worried that he was making a mistake by “trying to boil the ocean.” Wouldn’t it better to focus on one thing, perhaps the NHS App? Gould said that he recognized that he had “an elephant to eat” and that NHSX couldn’t do everything—but at the same time it couldn’t do just one thing. The organisation will set out short-term and long-term priorities, and if there was one thing that should be pursued above others it would be the flow of data.
The shining example of Cambridge
The meeting was held in the offices of IQVIA, which, said Tim Sheppard, the chief executive, is the fourth largest life sciences company in Britain. It carries out a quarter of the clinical trials in the UK, although only 6% of the patients it has in trials globally come from the UK. People working in the NHS may not realise it, but the NHS is the most digitally mature health system globally. It has a mass of data, most of it unexploited. There are huge business opportunities for the UK, but, he emphasized, the country will have to move quickly to realise them. It could easily be left behind.
Roland Sinker, the chief executive of Cambridge University Hospitals NHS Foundations, showed a picture of the huge health sciences campus in Cambridge, which is in three parts: the hospitals and health care section; the university basic science section, which includes the Laboratory of Molecular Biology; and the business section, which includes Astra Zeneca, Philips, Microsoft, GSK, and many small and medium enterprises. All three parts will benefit from a flow of high quality data, although Sinker emphasised that the Sanger Institute, which works on the genome, is more interested in quantity of data than quality. To make real progress data are needed on some 50 million lives.
As well as being the chief executive of the hospitals, Sinker is the accountable officer for the Cambridgeshire Sustainabilty and Transformation Partnership (STP), and he said that a digital care system must work as well for a care worker in a rural area as the chief executive of a large hospitals. He stressed that the NHS Plan is about delivering more services in the community, which means that the hospitals in Cambridge (and elsewhere) must shrink. (This message, I reflected, seems to be lost on the government.)
After passing quickly over how the installation of EPIC, the American electronic record system, plunged the hospital into multiple problems, including financial difficulties, Sinker described the many benefits that flowed from the system. He ended by what he and his colleagues see as the big challenges to digitising the NHS. Firstly, it will need considerable funding both of capital and revenue. Without such funding, he said, things will stay roughly as now. Secondly, patients and staff must be carried along. Thirdly, systems must be integrated and interoperability achieved. Finally, the NHS must learn to benefit from big data and artificial intelligence.
Asked at the end of the evening for final messages, Gould said “engage with us” and be realistic about timescales. He’ll be back in a year to report on progress (or the lack of it).
Richard Smith was the editor of The BMJ until 2004.
Competing interest: RS is the unpaid chair of and has equity in Patients Know Best, a software company that brings all patients’ records together and puts them under the control of the patients. https://patientsknowbest.com/ It has many contracts with the NHS.