Ahead of Tuesday afternoon’s Commons Health Select Committee session with Jeremy Hunt, we’ve published a briefing with some current questions for the Secretary of State for Health. Hopefully the Committee will get chance to ask one of them.
As a result of the care.data Advisory Group public meeting in Manchester and recent press coverage, we have also written directly to both the Secretary of State and NHS England Chief Executive, Simon Stevens, about matters of increasing concern in NHS England’s approach to care.data. We look forward to public statements on the substantive issues we have raised, certainly before any ‘pathfinder’ is to proceed.
Last Friday, 5 December, HSCIC held another event as part of their post-Partridge Review process. The Information Centre has made a number of positive changes since the Partridge Review, and we hope this approach continues into the future. Unfortunately, HSCIC is often hampered by the decisions – or lack thereof – of NHS England, which has clearly not gone through the same level of reflection and renewal on consent and data issues since the care.data debacle earlier this year.
It remains to be seen if the Department of Health itself wishes to be more like HSCIC than NHS England. With the Secretary of State’s commitment that the role of National Data Guardian will be made a statutory body “at the earliest opportunity” and an amendment to Jeremy Lefroy’s Private Members’ Bill to do just that, the opportunity is there (see our Bill Committee briefing). Given weasel words that have been used before, it is actions that are required from the Secretary of State to deliver on his promising words.
We have also proposed a second clarification amendment to Jeremy Lefroy’s Bill – for a transparent register of every body authorised to make use of the NHS number – which we hope to see adopted at Committee Stage in the Commons, followed by Third Reading and all of the stages in the Lords before the election. And we note even a draft of the Regulations to define “the promotion of health”, sanctions for misuse and the rules and operation of the Confidentiality Advisory Group have yet to be published. There is a long way to go.
Speaking of a long way to go, we have still heard very little about the Department of Health’s proposed changes around “Accredited Safe Havens”. From what we do hear, we are increasingly concerned that they may allow data to be reused in “misguided, but well-meaning” ways, by entities that would cause significant concern were they to access data they might be a little too eager to get.
This week is the first Leadership Meeting of the Department of Health’s National Information Board (NIB) since the lay members were appointed. The event will be broadcast live on Tuesday morning. While usually paid to be one half of medConfidential, Sam Smith has been appointed by the Department of Health as a lay member – “like a non-executive director” – solely in a personal capacity, and sits on the Board on that basis.
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 get in touch – firstname.lastname@example.org .
Seasons Greetings to all – there’ll be one more update before the end of the year.