We hope you had a good summer. Ours was interesting, to say the least.
Parliament begins sitting again on Monday, and people will wake up to the stack of things we’ve got ready for them. But in the meanwhile, quite a lot has happened:
care.data “paused” yet again
Despite NHS England’s announcement in June that the care.data pathfinders would be starting at “the beginning of September”, the Secretary of State on 2 September effectively pushed back the restart to at least the end of January 2016.
The announcement (originally) said:
The National Data Guardian for health and care, Dame Fiona Caldicott, will… provide advice on the wording for a new model of consents and opt-outs to be used by the care.data programme that is so vital for the future of the NHS. The work will be completed in January…
A later “clarification” omits to mention care.data, but confirms that the National Data Guardian will develop “clear guidelines for the protection of personal data against which every NHS and care organisation will be held to account. She will provide advice on the wording for a new model of consents and opt-outs, to enable patients to make an informed decision about how their data will be shared.”
This work – a task NHS England singularly failed to complete in 3 years! – is to be completed in January, “…with recommendations on how the new guidelines can be assured through CQC inspections and NHS England commissioning processes.” Apparently “no arbitrary deadlines” only applies to NHS England.
Where does this leave the care.data programme itself? Well, for starters…
Tim Kelsey ‘opts out’ of care.data
On 17 September, care.data mastermind Tim Kelsey announced his resignation as National Director for Patients and Information at NHS England. He has taken a job as commercial director for Telstra Health, a division of Australian telecomms provider Telstra Corp, to which in March this year DH sold Dr Foster Intelligence, the company Kelsey co-founded in 2000.
Tim Kelsey leaves the UK for Australia in December – an antipodean departure emulating that of the former NHS Director General of Information and head of Connecting for Health, Richard Granger, some years back – but his departure leaves a number of important issues unresolved.
As we learned from care.data Programme Board papers that were finally published in August, and from subsequent Board meetings of both NHS England (video) and HSCIC (cf. minutes on p10), the care.data Directions still aren’t finalised. Indeed, in responding to the Directions sent by NHS England, HSCIC’s Board identified five key unaddressed issues in addition to matters medConfidential had raised.
There’s also no sign of the CAG Regulations, due since the passage of the Care Act 2014 last summer. This means that promised safeguards such as “one strike and you’re out” sanctions for data abuse or misuse and, crucially, the closure of the commercial re-use loophole – persisted by the over-broad definition, “the promotion of health” – have still not been enacted.
Dame Fiona Caldicott is rewriting the language on consent for patients, which NHS England previously said was ‘ready to go’; HSCIC appears close to being able to ‘fix’ the 9Nu4 opt-out problem, currently affecting over a million patients, that NHS England dumped on it; and DH is finally drafting the Directions on Patient Objections, required to deliver on the Secretary of State’s 2013 promise to respect patient opt-outs.
Assuming the decision is to replace him, whoever replaces Mr Kelsey has a tough task and problems much wider than just care.data to resolve – the digital public health disaster that is the NHS Health Apps Library, to mention but one.
Patients and Registered Medical Professionals must be fairly represented throughout these processes and on all relevant bodies (the care.data Programme Board, for example, still has no public and patient representative) and both NHS England and DH must ensure that the new ‘worldview’ – drawing on lessons learned the hard way – is consistently applied across the health and care system.
medConfidential believes it is still possible to preserve confidentiality and consent in health and social care, and will continue to work to ensure that every flow of data into, across and out of the NHS and care system is consensual, safe and transparent. If they want to regain public confidence, it is up to the Government, DH and its arm’s-length bodies to now show they can do so, in a trustworthy way.
Statutory National Data Guardian
The Government has now published its consultation on the remit and functions of the National Data Guardian – the role currently fulfilled by Dame Fiona Caldicott. medConfidential welcomes this consultation, available here, which should lead to legislation that will ensure the strength and the remit of the National Data Guardian into the future.
medConfidential will be responding formally in due course, and we have published some initial observations on some of the significant questions raised. We strongly encourage anyone with views on this vital statutory reinstatement of overarching, independent governance oversight to make a submission of their own before the 17 December deadline.
Another new database?
The ‘Medical Innovation Bill’, first proposed by advertising magnate Lord Saatchi, will shortly return in the form of a Private Members’ Bill by Chris Heaton-Harris MP, entitled the ‘Access to Medical Treatments (Innovation) Bill 2015-16’ (draft Bill here). The new Bill has its Second Reading in the Commons on 16 October.
medConfidential had some questions for Mr Heaton-Harris on the content of the draft Bill, and had a meeting with him last week. Our comments and suggestions arising from that meeting covered a ban on marketing to patients, Data Usage Reports (including our example of what one might look like) and an alternative approach that might deliver the policy intent of the Bill without creating another new database, or giving DH duplicates of powers it already has.
We shall watch the progress of the Bill with interest.
In other news…
medConfidential continues to draw attention to matters of importance to patients and – in our continued membership of the up-to-now somewhat ignored care.data Advisory Group and engagement with other groups, Boards, panels and processes – providing robust but constructive criticism to those who need it.
However, issues sometimes come up that have a wider impact than in just health and care. (You may remember All But Names, a few months back.) One such issue is Freedom of Information; a vital tool for all those who seek to hold the powerful to account. Sam and Phil have joined with others in the FOI community, including journalists, campaigners and citizens across the country in a project to #saveFOI.
The purpose of #saveFOI is to defend against threatened restrictions to Freedom of Information, proposed in the Terms of Reference for the FOI Commission – and by fees proposed in an earlier consultation affecting FOI appeals, that could mean charges of up to £600 to get information released.
The FOI Commission, already half-way through its appointed time scale, has only just put out a public call for evidence – and #saveFOI needs your help:
- If you have used FOI to help change the world for better, let us know. #saveFOI is assembling a dossier of FOI requests which led to improvements in the world (precisely which of these is the Government seeking to prevent?) and also examples of the broad and/or eccentric interpretation of the exemptions currently in the Freedom of Information Act. We need YOUR stories.
- Spread the word – on Twitter, on Facebook, on your blog and wherever else you can; the hashtag is in the name, #saveFOI, and the more people who speak up on the positive effects of FOI the harder it will be for the Government to restrict the transparency that is so vital to public trust.
Apologies for the length of this Bulletin. As we said at the top, a great deal has happened since our last newsletter – keeping us very busy.
We remain hugely grateful for the continuing support you and our other supporters provide, most especially the actions you take when we need you.
Phil Booth and Sam Smith
11th October 2015