I wonder whether Jeremy Hunt, the Secretary of State for Health, is secretly pleased about the recent furore over care.data. The plan to merge GP, hospital and social care records into one database has provoked enormous public concern over potential breaches of confidentiality – and fears that the National Health Service would subsequently sell data to commercial insurance companies have flushed out embarrassing admissions that it has done this sort of thing in the past.
So Hunt is getting to play Mr Fixit, announcing draconian penalties for anyone attempting to identify individuals from anonymised data and promising legislation to prevent the sale of NHS information for “commercial insurance or other purely commercial purposes”.
The row over confidentiality and commercialism has distracted attention from what the government hopes this database will do. The standard rubric passes without comment: it will be a unique research resource, giving us an unprecedented opportunity to investigate links between lifestyle and disease and to detect unsuspected side effects of drugs or other medical interventions.
On the face of it, this argument seems to be uncontroversial. Yet the work that care.data will supposedly enable has been going on for years. The General Practice Research Database (GPRD) has been around since the early 1990s; it is a huge repository of primary-care patient information that has spawned hundreds of studies into lifestyle, diseases and treatments. Participating practices supply anonymised data voluntarily, with 20 million patients represented.
Groups such as the Haematological Malignancy Research Network (HMRN) have long linked to hospital and GP records in their studies of leukaemia and lymphoma. Patients’ NHS numbers enable researchers to track the lifelong health of each cancer sufferer in their study. Analysis of past GP records is uncovering important health antecedents that may help to explain the development of these diseases.
If this kind of research is happening already, why the sudden need for care.data? On coming to power, the coalition government commissioned a wide-ranging review of how to rebalance the UK economy and make it more internationally competitive. The results were published in March 2011 in The Plan for Growth, described as an “urgent” strategy to turn our economic fortunes around. In the report, health-care research was identified as a strong candidate for growth and inward investment and there was a new appreciation within government of the unique opportunities offered by the NHS.
Nowhere else in the world are the details of an entire nation’s health recorded so comprehensively by a single service – and one that is at the forefront of computerising its information. The existing NHS data is attractive to all researchers but it could be most lucrative for those in the pharmaceutical industry. The NHS’s already well-developed data infrastructure makes it an enticing arena in which companies can conduct clinical trials of new drugs. Forget selling information to commercial insurance companies – care.data is about making England the go-to country for pharmaceutical research and development.
So, in order to maximise the attractiveness, the entire population needs to be on offer. In March 2012, the voluntary GPRD was subsumed into the Clinical Practice Research Datalink (CPRD), a new body tasked with exploiting the NHS’s potential to the full, but voluntary enrolment was never going to deliver the whole-country data set required. Cue the automatic uploading of GP records to care.data.
The haste with which all of this is happening has major downsides. The HMRN is successful because the researchers, pathologists and clinicians in the network are all speaking the same data language. But throughout the wider NHS, information is still being recorded with varying degrees of rigour. The Health Informatics Unit at the Royal College of Physicians has been driving forward the adoption of a universal data language across the NHS but this is still years away. There is concern that the advent of care.data will overburden NHS providers, preoccupying them with trying to extract data for which they don’t have the systems or the right language at present.
Another rationale for care.data is its ability to audit care and pick up poor performance. Again, this kind of work has been going on for years and the data is still criticised as being of poor quality. My practice repeatedly flags up as an outlier: while we appear brilliant at preventing heart attacks, we seem to be appalling at treating children. In reality, our population is heavily skewed to young families, as a result of which we have many paediatric admissions but fewer older patients to develop heart disease. The algorithms that are supposed to adjust our data to match our demographics simply don’t work. More development will be needed before meaningful audits and performance checks can be conducted.
The publicly trumpeted goals of care.data are laudable and all should be achievable, given time. Hunt should be frank about the economic imperative behind the urgency to establish the database and should engage in a sensible discussion about what might be compromised by undue haste.