Policy Update February 2014 - NHS 'care.data' Project
Tom Smith, BSG Chief Executive
On the 18th February, and following a lot of media pressure, NHS England were forced to announce that they would delay the introduction of the 'care.data project' admitting they had not done enough to explain the scheme to the public. NHS England promised that it would soon be launching a "very exciting" programme designed to better communicate the purpose and benefits of the data-sharing scheme. For the long-term benefit of the NHS, we should hope this step-change is meaningful and successful.
Phil Booth, of the campaign group MedConfidential, was one of many who were pleased by the decision to pause care.data. He said, "Finally officials at NHS England have seen reason. To upload millions of patients' confidential data without providing full and proper information or seeking consent would have been the largest breach of confidence in NHS history."
Several problems came to light. The public were not aware their data was being uploaded. There were concerns that private information would be accessed. There were fears from some that the private sector would purchase the data, something that was reinforced by a Telegraph report that an agency linked to the insurance industry had previously bought data, though they failed to explain that the data was aggregate and not individual. NHS England said this would not happen now and that decision was made prior to its creation. Not many people will have been reassured and NHS England now have a lot of work to do to increase confidence in its ability to handle data.
The row partly became political because of concerns the government were not seeking to explain the scheme to people and because there are proposals to share the data with NHS partners some of whom are private companies. Some of these companies provide analytical services to the NHS, supporting commissioning and there is a fear that they will use access to the data to grow other aspects of their business. In The Times, Hugo Rifkind noted that discussion over medical information was becoming another battlefront for an ideological discussion of whether the NHS is being privatised. "This is blinkered nonsense at the best of times, and particularly so here. For one thing, Care.data is a medical project, not a political one, and your 'Tories want to sell the NHS' antenna has to be set to a ragingly high paranoia rating not to realise this."
The basic problem has been a failure to demonstrate that systems are in place to answer public concerns. As Labour health spokesman Jamie Reed said: "This is another NHS shambles of this Government's own making. Along with health professionals, we raised concerns about the security of the data to be shared. Patients need to be assured that their records will be genuinely anonymous and that they have had the opportunity to opt out." Both the BMA and Royal College of General Practitioners have warned that patients have been kept in the dark about plans.
When the Health Select Committee asked NHS England officials for the plans that had been made to handle the project they found that no code of conduct had been drawn up for the implementation of care.data even though one should have been drawn up under the terms of the 2012 Health Act.
A good idea, collecting information to better inform clinical management is a good idea but the apparent lack of preparation risks jeopardising an important project. This view was best expressed by Sharmila Nebhrajani, the new chief executive of the Association of Medical Research Charities, who said care.data was a good idea in principle that had been "stymied by its execution". She said: "Charities and their supporting patient groups have always said that sharing data for research can be a really valuable opportunity to speed medical research but it must be done with care, competence and consent."
The Financial Times was irritated by the debate and expressed concern that that those encouraging a backlash against NHS plans may do patients a mis-service. They note fears that the state could know too much about people and that the public is being encouraged to revolt. 'But what about the opposite dystopia? Powerless patients forced to take what they are given by a state that is ignorant of what works best. The tyranny of not knowing.'
Over the next six months care must be taken to explain the benefits of collecting large data sets while pointing patients to the safeguards that exist. As a GI community we have a responsibility to help explain the benefits of having large data sets with meaningful clinical information. Important initiatives like the IBD Registry could be stymied be a backlash against the centralisation of data (though the public may have more faith in a patient-professional partnership holding the data than in NHS England).
The IBD Registry will provide local, regional and national perspectives in order to better define the pattern of IBD and as a resource to help advance understanding of and response to the condition. The Registry will enable researchers to access up-to-date real time information about services, patient characteristics, the natural history of the condition, and drug treatments and their outcomes.
As well as national gains there are significant local advantages in collecting data locally. At Luton and Dunstable Matthew Johnson and colleagues are using the additional data to change the way they care for patients. They have set up virtual clinics offering telephone advice and support, freeing up slots in the hospital, providing greater access and helping commissioners to save money by reorganising services. They have been shortlisted by the BMJ for Gastroenterology Team of the year!
The Registry provides a vehicle for easily collecting and using real time clinical information to feed into a UK-wide data set and future IBD Audit. Collecting information will help to strengthen standards and provide a foundation for improving care for IBD patients. We should play our part both in explaining the benefits of central data collection and in encouraging NHS England to come up with the safeguards that will turn the tide of public debate in support of large-scale data analysis.