10 Feb, 14 | by BMJ
Digitisation of the NHS will both save and improve it believe Jeremy Hunt, secretary of state for health, and Tim Kelsey, national director for patients and information at NHS England. Both were youthful, bubbly, and even charming as they did a double act last week at the Cambridge Health Network, although Kelsey had to perform alone for an hour while Hunt was stuck in traffic courtesy of the tube strike.
When he finally arrived Hunt began by saying, “This has been a tough year for the NHS.” Increasing transparency is surfacing problems in the NHS. What he found most disturbing about the patient abuse at Mid Staffs was that “people in the system” had known that something was wrong for about five years before action was finally taken.
Fresh from university in 1991 Hunt started a business exporting marmalade to Japan. It was not a success: he managed to export only half a container load. If it had been a success, he joked, I wouldn’t be here now. He evoked 1991 because it was just the beginning of the internet revolution, and we had no idea how it would change our lives—how, for example, we would be able to email anybody, anywhere, at any time, and how we could do free video calls to anywhere in the world. He and Kelsey believe that the NHS still has to experience the same revolution, but that it will come.
Hunt selected three developments to illustrate the importance of digitisation. Firstly, he envisages all health records being electronic within five years. We will, he said, look back and wonder how we managed to operate in a paper world. The change, he expects, will be achieved not through a huge centrally driven enterprise, like the doomed Connecting for Health, but by requiring hospitals and Clinical Commissioning Groups (CCGs) to make it happen. Once all records are electronic, he believes, personalisation of healthcare will be made possible.
The second development is Care.data (said as “care dot data”) whereby data will be gathered on not just “a sliver” of what happens in the NHS, but on much more, including encounters with GPs. Everybody in England has been sent a leaflet explaining what data will be collected about them and how they can opt out. The decision that people will have to opt out rather than in has caused great upset among some, and Kelsey was on the Today programme last week explaining the benefits and trying to convince the sceptics. Accepting that the case could probably be better made, Kelsey’s blunt statement at the meeting was that there had to be a deal with the public and the NHS confessing that “without your data we can’t guarantee your safety.” He quoted a patient with muscular dystrophy who said to him “If the NHS can’t remember me how can it claim to be safe?”
There have been false stories about the data being sold to insurance companies, and one general practice is trying to opt out its entire list. Two “iconic” GPs, Iona Health, the “Mother Teresa of general practice,” and Clare Gerada, “the Hillary Clinton or perhaps Fidel Castro of general practice,” have ended up on different sides of the debate and have been slogging it out in the old and new media much to the amusement of the rest of us.
There is a risk of “reidentification,” said a journalist in the audience quoting how Latanya Sweeney, a Harvard professor, had been able to identify Governor Weld of Massachusetts from “anonymised” data on state employees that included every hospital visit. Name, address, and social security number had obviously been removed from the data set, but Sweeney combined that data set with another from voter rolls that included the name, address, ZIP code, birth date, and sex of every voter and identified Weld with ease. Only six people in Cambridge had the same birth date as Weld, three of whom were women, and only one of the men had his ZIP code. Sweeney then sent the governor his health records. Kelsey pointed out that in Britain nobody has ever been identified from 25 years’ use of Hospital Episodes Statistics and that it will be a criminal offence to reveal somebody’s identity.
The data will be used initially only by CCGs, and it’s always seemed to me that one of the main reasons that commissioning has been largely a failure is that basic data have been missing: how can you commission effectively if you don’t really know what is happening?
The third development Hunt hopes for is that we will begin to “drive our own health destiny just as we drive our cars.” An important step in this direction is that by March 2015 people will have access to their electronic records held by GPs. Martin Marshall, a former GP, pointed out that access to GP records usually means nothing to patients because the GPs have written the records for themselves. Much more is needed, including web based personal health records that can suck the data out of GP systems. Kelsey wondered how long it will take patients to catch on to the benefits of controlling their own records? It took, he said, about 10-12 years for people to begin to use online banking routinely. The turning point was when patients could bank through mobile devices, and the same may be true for the NHS.
Kelsey, stranded as a support act who had to perform for too long, was similarly upbeat, claiming that he had detected significant changes in the NHS and the beginning of a social movement of people taking charge of their own health. He particularly remembered judging a competition of 70 apps at Imperial College that included ones for teaching people to breathe again after cardiac surgery, guiding women through pregnancy, and allowing children to record how much pain they were having when undergoing chemotherapy. Kelsey was “overwhelmed by the energy” in the hospital and thought it was happening everywhere.
He also thought the Family and Friends test a great success with one and a half million people making comments that could be shown in some cases to have led to improvements. A woman in the audience challenged this, saying that she thought patients were being pressurised into answering the questionnaire and were sick of answering questions. At this point Neil Bacon, clinician and founder of both Doctors.Net and iWantGreatCare, leapt to his feet, and after claiming that he might be supporting Kelsey for the first time in his life said that the woman was completely wrong.
“Transparency and participation” is Kelsey’s mantra, and he boasted that in June last year nine surgical specialties released outcomes for each surgeon, something, he claimed, that no other health system has done. Other specialties, including medical specialties, are now finding ways to release their data.
“Dozens of things have gone really badly,” he conceded, and the one that he sees as a personal failure is that it remains “appalling difficult” for small and medium sized businesses to enter the NHS. He worried about “wagons circling” to keep them out. Hunt was asked if he could do more to promote the role of the private sector, and his answer was that it was “the kiss of death” for a Tory politician to promote the private sector because it would be dismissed as ideology. Better for GPs to make local decisions about including the private sector—because the public would probably accept such decisions.
Hunt was asked if he regretted that he had fewer powers than his predecessors. His answer was no because top down decisions simply didn’t work. Even if there appeared to be benefits from central commands there was gaming and unintended consequences. “I have,” he said, “all the power I need,” controlling a budget of £108 billion, 20% of government spend. “My job is to make the NHS better.” As Nigel Hawkes has argued convincingly in the BMJ, it looks as if the rhetoric of the Health and Social Care Act 2012 handing power for running the NHS from the Secretary of State to NHS England has come to nothing with Hunt making an announcement almost every day and little being heard from NHS England.
Another question to Hunt was about the tension of many providers thinking that consolidation was needed to provide more integrated services and competition authorities getting in the way. “We need a better system,” agreed Hunt, but, he added, we have learnt that big changes are possible if there is good consultation with the public. (Supporters of Lewisham Hospital might have tittered at this.) He’s also learnt that “having to do something for financial reasons doesn’t wash with the public.” Finally on this topic he stated, perhaps more in hope than expectation, that it will not be in anybody’s interest to make reconfiguration part of the election debate. (A friend pointed out that Jeremy Hunt’s website states that “He was closely involved in the successful fights to prevent the closure of the Royal Surrey and Milford Hospitals.” Shome mishtake shurely?)
Kelsey in his talk evoked an oncologist who had told him that his idea of digitisation transforming the NHS was total nonsense. The assumption was that nobody in the room, about a third of whom were from the private sector, would agree with the dinosaur oncologist, but I doubt that the oncologist would have been convinced if he was there. I also reflected as I cycled home in the rain that the NHS in all its magnificent complexity is like one of Picasso’s faces in that it can be viewed in many ways. Optimism prevailed in this meeting, but a meeting held next door might at the same time well have been distinguished by deep pessimism.
Competing interest: RS is the chair of Patients Know Best, a company that supplies personal health records to the NHS; an employee of UnitedHealth, which works with the NHS under the brand Optum; has been a member of the Independent Whole Person Care Commission set up by the Labour Party and about to report; and has been and is a patient of the NHS and has never used private care except for paying £50 to Marie Stopes for his vasectomy.
Richard Smith was the editor of the BMJ until 2004 and is director of the United Health Group’s chronic disease initiative.