Another data sharing fiasco
Pulling the plug on a Covid research database
What is it about the millions of us who want to share our health data for research purposes that so many people in healthcare seem not to like? News has emerged of a plan to ditch a valuable patient database, a move so damaging and so daft that the woman who led the UK’s Vaccine Taskforce has felt the need to use the technical term ‘bollocks’.
That, DameKate Bingham told the Observer, was her reaction to any talk of the UK becoming a science superpower after hearing of the demise of the Covid Vaccine Research Registry. This database consisted of around half a million people who signed up early in the pandemic to take part in Covid research, many agreeing to take the risk of being injected with the virus to help in the hunt for a vaccine. Most had also said they were prepared to take part in research into other conditions, and it was hoped that the volunteers would continue to play a valuable role for years to come.
Dame Kate first revealed in a couple of tweets that this wasn’t going to happen:
It is the NIHR, the National Institute for Health Research, which has made this decision so I asked to speak to someone about the reasoning behind it. Nobody was available, but the NIHR sent me a statement stressing that the vaccine registry had been a huge success and that the plan was to invite participants to sign up to a new research database.
“This will help create a new and better registry to help people with all conditions,” the statement said. It explained that no date had been set for the closure of the vaccine registry, but it would in time be superseded by “this new and improved service.”
“New”, “better”, “improved” - so that’s all fine then? Well, no - people who had gone through all the complex checks to sign up to the registry will be asked to go through that all over again, and it’s likely that many will feel it just isn’t worth the bother. And as Kate Bingham indicates, starting all over again is likely to prove a lot more expensive than just carrying on with the existing registry.
At the beginning of the pandemic, there was suddenly a “can-do” attitude across the NHS and a more relaxed attitude to rules and regulations, and that meant projects which in normal times would have taken years to complete were put together in weeks.
Sometimes, as with PPE procurement, that didn’t turn out well, but the Vaccine Taskforce and its Covid Registry are shining examples of what can happen when an outsider asks the simple question - “what’s to stop us just doing it?”
I wrote a few weeks ago about how the pandemic and a suspension of the normal rules allowed the GP records of millions of people who had signed up to the UK Biobank to be accessed for the benefit of Covid researchers. But that arrangement is also under threat now that there has been a return to the ultra cautious status quo.
Often, it seems, the concern is that too much data, too much power, is being handed to that bogeyman, Big Pharma. Well, Big Pharma in the form of Pfizer, AstraZeneca and Moderna, gave us the vaccines. Big Bureaucracy on the other hand…..
It's possible that someone has raised a GDPR-related flag legitimately on the current database which may require the re-confirmation of personal sensitive information from those who registered when many of the controls were lifted on a temporary basis.
If that is the case, it should be relatively simple to re-establish the database on a legal footing and allow it to continue and improve into the future.
That said, the bland, civil-service-like, safety-first statement from the NHS gives no indication or rationale whatsoever and just adds to the concern raised by Kate Bingham (and everyone else).
The JFDI attitude is much needed in the NHS (and education) and many more organisations. The power of the people is being wasted by the woke brigade and those with vested interests.