What happened in 2014?
In January and February, following NHS England’s catastrophic junk mail leaflet campaign, we helped “stop” the nationwide rollout of the care.data programme – though NHS England denied that word until October – and got the “opt-out” fixed so that no data would leave your GP practice, rather than the fudge NHS England had tried to pull.
In March the government added amendments just as the Care Bill left the Commons for the Lords. Though intended to reassure the public,“the promotion of health” clause introduced a loophole for commercial users that’s yet to be fixed. April saw the publication of HSCIC’s first (incomplete) Data Release Register, revealing dozens of companies – not just insurers – had bought NHS patient data.
In May government rejected Lord Owen’s amendment to the Care Bill that would have reinstated much-needed statutory independent oversight. By November the need for this was so critical that Jeremy Hunt appointed Dame Fiona Caldicott as National Data Guardian, a role to be made statutory “at the earliest opportunity”, barely 53 weeks after the IIGOP was formed.
Sir Nick Partridge’s Review of ‘historic’ releases by the Information Centre was published in June, confirming “significant lapses” – and ongoing use of the ‘National Back Office’ by the police to trace people. June also saw the Annual Representatives Meeting of the BMA vote for care.data to be opt-in. Over the summer, polls showed a serious “data trust deficit”, and suggested almost a third of GPs would opt their patients out.
In October, NHS England began to try to restart the scheme, announcing several ‘pathfinder’ CCG areas – though, as it turned out last week, it still hasn’t signed up GP practices in these areas. And just yesterday, the Independent Information Governance Oversight Panel asked rather a lot of questions, to which answers must be provided before the scheme can proceed.
Some good news
Firstly, and as we first raised back in February to the Health Select Committee, HSCIC is building a “secure data facility”, where those who are content for all their data to be used can have it used safely. A single locked-down source where legitimate, transparent and ethically-approved access can be properly managed and audited – rather than copies of millions of patients’ information being sent out – is also the safest way to ensure people who don’t want their data used can have it excluded. This isn’t just about care.data and your GP records, but about all your medical records, held in trust by the NHS.
Secondly, our proposal for Personalised Data Usage Reports are the mechanism for the HSCIC and NHS to report to each individual patient how their data was used, and for each individual to be able to know – rather than just have to trust – that their wishes have been respected. It can also show the good that has come from legitimate uses of data. Even safe and consensual uses of data must be transparent, and we have spoken to no bona fide researchers who ever thought otherwise.
These are both a good start. When they are in place, it’s possible a replacement could emerge from the wreckage of NHS England’s care.data debacle. Since the summer, its communications have fallen apart (again), the content has been criticised repeatedly by experts, yet there will (apparently) be “no changes to the specification”. Any attempt to revive care.data before safe and transparent data use has been seen by the public is likely to backfire.
And, in an unexpected footnote to an incredibly busy year, we were deeply honoured to be shortlisted for a prestigious Liberty Human Rights Campaign of the Year Award – a recognition that the work above has begun, but remains unfinished. We offer congratulations to Lord Low for winning the award for his defence of the Human Rights Act, and applaud the fantastic work of our fellow nominee, Police Spies out of Lives, in their fight against injustice. They deserve everyone’s support.
What next?
In the New Year, the Shadow Minister for Health has said the “Opposition will table an amendment on Report to ensure that the National Data Guardian is put on a statutory footing”. This clearly must be done right, and we look forward to seeing the detail of what the Opposition proposes.
In the same debate on Jeremy Lefroy’s Public Members’ Bill, Under-Secretary of State for Health Dr Dan Poulter told Parliament: “The National Information Board is working towards a whole system consent-based approach, which respects individual’s preferences and objections about how their personal and confidential data is used, with the goal of implementing that approach by 2020.”
2020 is a long way off, so we hope we don’t have to wait too long to see exactly what is being proposed – and what work will commence towards making data use across the NHS safe, consensual and transparent in the near future.
It’s Christmas…
We deeply appreciate every donation you give us and especially the messages you include with them, whatever the amount… £5, £50 or more. We know each donation is an expression of individual support for what we are doing and the good wishes that come along with that.
medConfidential is a tiny organisation, hitting well above its weight, but to keep going we have to find around £60k per year. If you are – or know – someone who could make a substantial contribution towards our operating costs, please do get in touch: coordinator@medconfidential.org
And finally, we wish you and your loved ones a safe, consensual and relaxing festive season.
See you next year… expect a busy January!
Phil Booth, Sam Smith and Terri Dowty
Coordinators past and present, medConfidential
19th December 2014