Health leaders gathered in Manchester for the Healthcare Innovation Expo look set to have their future-gazing overshadowed by the disarray over care.data, after a truly disastrous week for the open data initiative.
A fortnight ago, NHS England was forced to announce a six-month delay to the project to link the Hospital Episode Statistics to other databases and make the information available to researchers and others, after a public outcry about the lack of consultation on the plans.
But the commissioning board had begun a fight back in defense of the programme, with a major communications campaign promised in an otherwise fraught session at the Commons’ health select committee, and tough new legislation unveiled by health secretary Jeremy Hunt.
Despite this, by the end of the week, care.data and its chief architect and champion Tim Kelsey, NHS England’s director of patients and information, was being mercilessly ridiculed as a fantasist, swivel-eyed dictator in a Downfall-spoof on YouTube.
The video might have remained the preserve of what its creator dubbed the “tin-foil hat wearers” had it not been merrily tweeted by Kelsey’s outgoing boss, NHS England chief executive Sir David Nicholson.
There’s a certain irony here, given that Sir David has at times been lampooned for not being a digital native, and for being a new convert to Twitter. By Sunday, though, the video had received more than 6,000 views and featured on Sky news.
Not that Sir David’s intervention was the only reason the video went viral. Downfall videos may not be a new trope, but the care.data version is uncomfortably close to the bone.
At one point, Kelsey as Hitler raves: “They were just supposed to give us their data” and: “I should never have given them an opt-out.” The spoof also has a neat line in his unshakeable conviction that he knows what is right – even if people disagree with him.
This must be particularly uncomfortable for Kelsey who, as well as being director of patients and information, also has overall responsibility for communications at NHS England. Getting your own personal Downfall video covered by national media after being tweeted by your boss is a very public media meltdown.
Denying the undeniable
In policy terms, though, the really serious damage to care.data came on Monday with the revelation that details of hospital admissions from 1989 to 2010 were handed to the Institute and Faculty of Actuaries by the NHS Information Centre.
The Telegraph’s exclusive, published the day before select committee hearing, made a nonsense of civil servant and ministerial claims that no patient identifiable data had or would be released by the NHS to insurers; a key claim in much coverage of the media coverage of the care.data programme.
Actuaries had actually been handed over line-by-line data for every individual hospital episode, covering 13m individual patients, with unique pseudonymous identifier. The resulting analysis had been used to help justify increases in premiums for over 50s.
The Health and Social Care Information Centre, which took over the NHS IC in April last year, told the BBC that this release of your medical records broke the rules and would not happen on its watch.
It also said there may have been other similar releases, but won’t confirm anything until "later this year.” Strangely, this failed to reassure critics or supporters of the project.
Big data in medicine advocate Ben Goldacre asked in a Friday Guardian article: “Are there previous dodgy data-sharing arrangements, agreed by NHSIC, that the HSCIC is still honouring, with data still flowing out of the building?”
Just a week earlier, Dr Goldacre had been at the vanguard of what had looked to be a concerted fight back in defense of big data to support medical. By Friday he was despairing of the mess and confusion over governance and who has access to what.
Lacking the commons touch
A lack of robust governance structures and confusion over the use of both HES and care.data was the prevailing impression given to Parliament. Witness after witness lined up before the health select committee to defend the aims of care.data and then proceed to lay in to its execution and communications.
All this means that the six month delay to care.data announced in February now looks like it will have to be far more root and branch than originally intended. A bigger and louder marketing campaign looks unlikely to suffice.
Nor does Hunt’s promise of legislation look like it will do the job. As he Mail Online put it, he has pledged to make “cashing in” on data a criminal offence and announced an uncompromising sounding ‘one strike and you’re out’ for any transgressors.
But when data is already being given wholesale to the insurance industry for free (or as free as makes no odds, given that the NHS reportedly got around £2,000 from the actuaries) it rather misses the point. It also looks like shutting the stable door.
As such, the biggest damage of the past few weeks, and most difficult to fix, is the corrosion of public trust in the use of NHS data for extremely beneficial research purposes. The forfeiture of public trust may scupper the whole project, if politicians decide it has become too toxic.
Care.data is in trouble
This could have probably been avoided if care.data had been less grandiose in ambition; and if there had been more and clearer thought on what data it really needed to collect and for what purposes.
In addition, there should have been far clearer governance, ethics and consent mechanisms in place long before any public information campaign was planned; and that campaign should have been less grudging, more accurate, and more accepting of the idea that some people will opt-out.
Most of all, there needed to be a recognition that in a post Edward Snowden-era public trust has to be earned and not taken for granted by government and public authorities.
Unfortunately for NHS England, there has been a shift in public attitudes to the use of their data. Something the Information Commissioner’s Office warned public bodies about at the end of last year.
The Downfall video satire hits the mark because it distills all these strands. Asked whatever happened to open data, Hitler raves that it was only meant to be open to those with open pockets. The public were not meant to read the leaflets, just “give us the data.”
The Innovation Expo session on care.data looks set to be one of the most keenly followed of the show and care.data looks set to dominate headlines for months to come.