Opening up NHS data to all will bring jobs, economic growth, innovation, a better health service, reduced health costs, and a new age in science. That was the heady message heard by a long dinner table of the good and the great in the House of Commons last week. Most of them seemed to be competing with each other to announce the wonders that transparency will bring. But can it be true and will a few dissenters spoil the vision?
I should perhaps start by saying that I’m a zealot for transparency. We live in a world where what is not open is assumed to be corrupt, biased, or incompetent until proved otherwise. We may not like it and it may not be fair—but it’s how the world is. But the benefits of opening up data go way beyond avoiding the negative, particularly for science.
Steve Smith, formerly of Imperial College now something important in Singapore, said how the life sciences are moving into a whole new age based on large scale crunching of data. Making NHS data available can ensure that the UK stays at the forefront in life sciences. John Bell, regius professor of medicine in Oxford, quoted Richard Peto (Britain’s foremost epidemiologist and “son of Richard Doll”) as saying that Health Episode Statistics (HES), a standard output of NHS activity, have improved so much in the past five years that they are now better for observational studies than anything produced in Sweden, Canada, or other countries well known for the quality of their routine data. Then the NHS includes pretty well everybody in Britain, and the demographic mix of the country makes the data still more valuable. Some of the data—genetic data, for example—are valuable, however, only in the context of having data from everybody, pointed out Bell. It’s important not to have many people opting out, and the people at the dinner favoured an opt out rather than an opt in system.
Transparent data also has the potential to transform health care. Everybody will know what individual doctors are doing, said Bell. If they are practising in a poor way they’d better watch out. Public health as well can be transformed by open data, said Sally Davies, England’s chief medical officer, particularly by “mashing” data in new and innovative ways.
Ian Carruthers, a senior NHS manager, has been chairing a working party on how to diffuse best practice through the NHS, a long standing problem, and he believes that open data can help. It can also, he thinks, promote innovation, save money, and encourage patients to play a more active part in healthcare.
Much of the innovation is expected to come not from within the NHS, but from entrepreneurs who will create unimagined and magnificent products and services, at least some of which will be exportable. Tim Kelsey, the founder of Dr Foster and now “transparency czar” (“Can you see through him?” somebody asked me), is the living example of an entrepreneur who created a successful business and helped advance the health service when given access to HES data. The government hopes fervently that where he has led others will follow, using not just health data but other government data as well. Indeed, it’s the economic prospects not surprisingly that seem to most excite the government. One of the senior people from Quintiles, the world’s largest “pharmaceutical services” company, would be able to create a thousand jobs with new access to data.
So who could possibly stand in the way of this train to the promised land? The media, patients, and doctors are three possibilities. “Animal test firms given your NHS data,” screamed a front page article in the Sunday Telegraph at the beginning of the month. The headline was carefully constructed: “your data” brings in all of us and shows who owns the data; “given” implies that taxpayers aren’t getting the return they should; linking “firms” and “NHS” plays into traditional fears; and concentrating on animals rather than people recognises the priorities of the British.
With the Leveson inquiry into the behaviour of the press underway and the phone hacking scandal still unfolding, privacy is high on the public agenda, and so this may not be an auspicious time for “giving away” patients’ NHS data. Do you want the Sun newspaper to be able to find out that your daughter has had three abortions or that Uncle Harry’s strange ways are the result of syphilis? Of course not, and there is a job to be done to reassure the public that such revelations will not be possible. Nicolaus Henke from McKinsey said that there was a need for “sharper arguments” on the case for change, and somebody from Scotland, which as usual is further ahead than England, said that it was essential to focus on benefits to patients; benefits to research and the economy should come second.
Several people pointed out that people seem quite willing through loyalty cards to give away huge amounts of information about themselves to Tescos and other organisations in exchange for paltry rewards. What can the NHS offer? Something more concrete than “better care”?
The other group who can get in the way are doctors, and while Bell may welcome a new age where no doctor can hide his or her poor practice many doctors won’t. Eschewing the applause that followed upbeat comments, various people pointed out the importance of getting doctors, particularly GPs, onside.
As I said at the beginning of this blog I believe in transparency of data, and I hope that the new age arrives soon bringing all the promised benefits. But one of things I’ve learnt over the years is that it is a good strategy to “underpromise and overdeliver.” The reverse can be catastrophic, and which recent enterprise exemplifies that? Connecting for Health. Let’s hope that this government initiative is more successful, and it might be wise to throttle back on the rhetoric.
Competing interest: RS ended up at the dinner as a second choice, as he discovered did several of the people around him. The dinner was too small, and he had to have a cheese sandwich when he got home. RS works for the UnitedHealth Group, a company that is very strong on processing and using health data and may benefit from the opening up of NHS data. He works, however, on a philanthropic programme and is unlikely to benefit directly from anything that the company might do with NHS data. RS is also the chair of Patients Know Best, a start up that uses information technology to enhance the patient clinician relationship and might benefit from increased transparency of NHS data. He is not paid but has equity in the company.
Trouble is even if issues of privacy, consent and confidentiality were sewn up to everybody’s satisfaction, including not sacrificing the wishes of the few in favour of the many or the stronger, the benefits are unlikely to be equal for all parties. The majority of people may well still give data altrustically without knowing whether it will benefit them personally and feel happy about that but, in a health syystem where it is almost impossible for NHS users to get good information with which to weigh up the good and weed out the poor practitioner and, difficult in many cases to change practitioners, the benefits look pretty one sided. Recently the advise given by a medic in a medical journal ,to people wishing to find a good GP , was to ask around at the school gate. even that is more than many people can do. This bit of nonsense would be even more foolish if somebody was needing an operation or good advise about a health condition but there is no option but to rely on the referral of the practitioner whether trusted or not. The inequality of information and power is too great to suggest a need to ’emphasise the benefits’ to NHS users, it hints at questions of trust unless information is given impartiallty or in a way that is unbiased. It is a shame that policies are introduced first and then the public has to react to them rather than being brought in at the outset. They may well be great ideas but the great and the good rarely give the powerless opportunities to speak for themselves. They have plently of cheese sanwiches but very few places at the table.
Patients do not know or realise that they can and indeed should check out the credentials of their doctor on the GMC website. Many MPs already feel that the GMC is too lenient with poor doctors. The GMC may yet issue only a warning when a docor has brought the profession into disrepute while having no restriction at all in their ability to see patients. A warning is in the public domain for 5 years once it has been issued, so I think the onus is on patients to be pro-active in checking out their doctor, rather than relying on word of mouth. This is true of both the NHS and doctors working privately. Patients can then make up their own minds.
Trouble is even the information on GMC websitre is so minimal a person cannot make a choice of who might be a good doctor from that alone. How should people really be able to choose? What information should be supplied in addition? Horrendously some advice is stiull to ask around at the school gate! How do health workers themselves know who is a good practitioner? It is a bit of a closed club whereas others have to rely just on pot luck regarding who they register with or who they are referred to