7 March 2014 —medConfidential
What just happened?
Following a disastrous showing from NHS England and HSCIC officials [from time code 1:20:30] in front of the Health Select Committee a fortnight ago, the government has laid a number of last-minute amendments to a piece of legislation called the Care Bill, which is now in its final stages before becoming law.
These amendments – clauses that change parts of the Health and Social Care Act 2012 – are to do with fixing some of the huge problems that have emerged with both care.data and the release of Hospital Episode Statistics (HES) data from the Health and Social Care Information Centre (HSCIC) and the bodies that preceded it.
medConfidential has made its position very clear to the Secretary of State and Department of Health officials. HSCIC is completely unfit for purpose in its current form. It requires radical transparency, i.e. timely publication of the details of all releases of patient data, both in the past and from now on, and rigorous independent scrutiny of every future release of individual-level patient data.
We do not accept ‘pseudonymisation’ as any sort of meaningful privacy protection – it may be necessary, but it is far from sufficient. The only information that should be called anonymous is properly-treated aggregate statistics. Every other form of patient data must be considered, and treated as, identifiable.
What can be done?
Given the brief opportunity for positive change, there are several other things we have been pushing for: making patient opt out a legal right, rather than at the gift of the Secretary of State; proper penalties for misuse and a ‘one-strike’ rule to provide serious disincentives for institutional abuse; taking the powers to compel doctors and care providers to upload data away from NHS England and HSCIC, making it an absolute requirement that any such move in future would have to be examined in public by both Houses of Parliament and be subject to a vote.
Of course, a few legislative fixes are not going to sort out the massive problems with inappropriate data-sharing and the care.data scheme, and we shall have to see whether the amendments that finally emerge in the Care Act 2014 do what we have been assured they will.
But we hope these, the publication of past data releases by HSCIC and the re-design of care.data that NHS England still has to come back with will offer the public a chance to see whether their concerns are being taken seriously.
Aside from the urgent Parliamentary work that must now be done over the next fortnight, we shall continue to work with our solicitors Leigh Day on the legal case against NHS England for misleading the public, speak to journalists and handle media so that people are properly informed, and coordinate with an ever-expanding array of groups and organisations that are waking up to what is happening to our medical information.
As mentioned in our last newsletter, people reporting problems via our formFix tool have now helped us contact around 400 GP practices where patients have had issues such as being handed the wrong opt out form. It is simple actions like this that will help thousands more people be able to opt out without a problem.
How can you help?
Keep spreading the word! Millions of people still haven’t a clue what’s going to happen to their medical records later this year, if they do not opt out.
We still don’t know how many patients will be affected by NHS England’s ‘pilots’, nor when they will be – so our best advice for people who have any concerns is not to delay but to opt out themselves, their children and anyone for whom they hold legal responsibility (e.g. lasting power of attorney). If in a few months you are satisfied that care.data and all the other systems are safe, you can always opt back in.
Don’t forget, the only control you have to protect your GP medical records is to opt out – if you don’t, under the scheme as it currently stands, your medical information will be uploaded in identifiable form.
Please make sure you tell every one of your family, friends and work colleagues; spread links to our website – www.medconfidential.org – on social media, in your blog, in forums you visit (but please don’t spam); write a letter to your local paper, to your representatives, to the organisations of which you are a member (unions, professional bodies, etc.).
We need your help. We are a tiny organisation, with minimal funding. If you can help us, please do – every penny received will be spent on averting the most appalling breach of confidence in NHS history and ensuring that in future every flow of patient data into, within and out of the NHS and social care system is consensual, safe and transparent.
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And please do pass on this newsletter to your friends and family. They can receive future editions by joining our mailing list at http://medconfidential.org/contact/
Phil Booth and Terri Dowty
7th March 2014