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Sitting in Britain, one has the uncomfortable feeling that the world outside is getting bigger. With green industries being lured by America, the City losing equity listings and film hit by the Hollywood writers’ strike, the UK must take care to defend the sector where we are a truly global leader: life sciences.
Our advantages are well rehearsed: world-class universities and skilled researchers, a centralised cradle-to-grave healthcare system, and the world’s most advanced genetic database in the form of the UK Biobank, which has sequenced the genomes of half a million Britons. But here is where the shine starts to come off. The Biobank is suffering from the inertia and conservatism of the NHS which, in a host of ways, is imperilling our lead in life sciences.
Half a million Biobank volunteers all agreed to make their medical data available to researchers. But in 4 out of 5 cases, according to CEO Sir Rory Collins, Biobank can’t access their full history. It has their hospital records but not their GP records, which GPs — after years of wrangling — are refusing to provide.
Collins calls this missing data “a catastrophic obstacle to improving health provision nationally and internationally”. Hospital records combined with genetic tests are giving great insights, for example into breast cancer risks. But without GP data, it is hard to make much headway on conditions like dementia, Parkinson’s, depression or diabetes. The small numbers of people hospitalised with these, or only admitted at a late stage, reduces the statistical power to detect associations. Access to GP data, for example, could more than double the number of cases available to study of people with chronic obstructive lung disease.
During the pandemic, joining up data saved lives. The Oxford ‘Recovery’ trial identified four treatments for Covid-19, including the steroid drug, dexamethasone, which has saved over 1mn lives worldwide. This was achieved because the government intervened to let Covid researchers access GP records. The sky did not fall in; there were no outrageous abuses. But since then, things have gone backwards. Attempts to assess whether those treatments could benefit patiets with long Covid, for example, are foundering because of the lack of a joined-up database. Professor Sir Martin Landray, who led the Recovery trial, compares the situation to “reading a book only to find that several chapters, many paragraphs and multiple sentences have been removed (and you don’t know which)”.
This humorous description of a Byzantine system reflects increasing exasperation among researchers and pioneering doctors. In the past few months the UK has limped back into the EU Horizon programme, and the chancellor Jeremy Hunt has given the sector an extra £650mn. But deeper problems remain. The UK has fallen down the global rankings for clinical trials, with drug companies going instead to countries like Spain and Australia. The gap between regulatory approval for drugs being granted, and the first dose, is lengthening. Novartis recently scrapped a major clinical trial for a revolutionary cholesterol drug in the UK, after the British Medical Association and Royal College of GPs had discouraged GPs from initiating the treatment. Meanwhile some cancer research projects are being abandoned because of problems accessing data.
The problems go further. Tim Ferris, the NHS’s outgoing digital chief, says lack of data join-up means the health service can’t tell in a timely fashion whether its investments in things like the 111 phone service, elective referrals or virtual wards are effective. If the 111 phone line tells you to go to A&E, the system can see what happens to you — but not if it tells you to go to your GP. This is absurd.
English GPs are nervous about data sharing because they are the legal “data-controller” for their registered patients. About a quarter of GP practices are sharing data voluntarily. But many others say they are concerned about the privacy of sensitive personal data, for which they are liable.
No one wants their medical records being sold to a third party. Doctors are right to insist that new systems must hold patient data securely and use it ethically. But in the 21st century, denying patients access to their medical records feels wrong. And refusing to release the data of consenting Biobank volunteers is outrageous. It suggests that privacy concerns may be a smokescreen. This week, NHS England had planned to write to GPs urging them to release data to the Biobank. But the British Medical Association has refused to sign the letter, because, they tell me, GPs have “competing urgent priorities” and need a “full and proper consultation” on the issue. Collins says they would only have to “push a button”.
The Biobank volunteers were recruited between 2006 and 2010. They undergo regular tests and fill out forms, in the service of the greater good. They would probably be amazed to learn that the BMA has spent years opposing the release of their de-identified data: despite the Information Commissioner having confirmed five years ago that it is legal.
Privacy concerns are not an issue for the Biobank, because everyone has consented. It will not increase doctors’ workload. So are they too risk-averse? Or do they fear that offering up their records will help the centre to scrutinise their performance?
The BMA has its mind on other things, having orchestrated this week’s unprecedented joint strike over pay by junior doctors and hospital consultants. This will do yet more harm to patients, few of whom can ever hope to join consultants in the top 2 per cent of earners.
I am beginning to wonder whose side they are really on.
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