Question: Did NHS England contact CCGs inviting them to become care.data pathfinders?

It seems all of the NHS England press office are relaxing under a tree, as they wont answer that question. In two other care.data articles also published yesterday, Pulse reports the ICO’s view that responsiblities are “good customer service” and that doctors are getting closer to opting their patients out.

A quote from a GP in that last article says, “opt outs in her surgery currently stood at 20%”, which is a significant amount of the population in that area, when at best only 50% will likely have heard of it. Tim Kelsey may argue “there is no percentage at which this becomes useful or not”, yet the statisticians may begin to have views as more figures are revealed. We’ve previously posted some thoughts on how NHS England can choose to empower GPs and also allow consensual research. Maybe NHS England can read that on their holidays, while figuring out how to be very clear and transparent with everyone on what they’re doing. Secrecy and confusion benefits no one.

The current level of confusion is highlighted by one GP who says patients initially think it a “good idea if the emergency doctors knew about their medical conditions.”. That of course, is unrelated to of care.data, which has no direct care applications at all, but a feature of an entirely different scheme, with a different set of problems and consent questions, the Summary Care Record (as it was known before being rebranded due to it being “toxic”). We can see why even GPs get confused though.

As NHS England recommunicates with GPs, hopefully they wont continue to cross-sell the benefits of other programmes as benefits of care.data. NHS England have no excuse for confusion remaining, as they near the end of the 6 month pause that was supposedly to solve all the problems

Consultations

As everyone’s on holiday, there are a number of open consultations at the moment that may be of interest:

1. Department of Health on Accredited Safe Havens. We’ve posted our outline replacement proposal here before, and will post a fuller submission when it’s completed. Deadline, this Friday
2. HSCIC Confidentiality Code of Practice. The long awaited HSCIC Confidentiality Code of Practice is out for consultation. Deadline: Next week
3. And a new one, which isn’t so much of a formal consultation as asking a bunch of people who have shown some interest, is on the new HSCIC contracts and agreements for data sharing, including rules for sub-licensing. We’ll have quite a lot of questions about these. If you yourself have any comments on either the drafts or documents, the HSCIC would like to receive your comments by August 29th, marked FAO Simon Gray via <enquiries@hscic.gov.uk>.

Job hunting?

The Department of Health is recruiting 3 lay members, at a day a month, for the “National Information Board”, which was set up in January to try and fix the trainwreck that DH saw coming. This is an important panel with oversight of both DH and NHS England’s overlapping remits and strategies.

[this para added later]: The academicly funded “Administrative Data Research network” is looking for a member of the public willing to give over a day a month, for free, reviewing their applications. The commitment includes relevant reading time, plus a video conference a month, with 4 in person meetings a year. Details now appear here (their website was broken, so here’s the word document they mailed to their existing lists).

NHS England is also trying to hire someone to be Senior Responsible Owner for Care.data, having failed to find an internal candidate — we can’t imagine why. If you’re interested, we put together a list of questions that you may wish to ask at inteview. Apparently the risk that they may have to answer them in a binding way has caused some furrowed brows, as an interview board misleading candidates is considered bad form.

I can’t imagine why.

NHS England are hiring for a new Senior Responsible Owner for Care.Data, having  internally failed to find someone willing to be responsible for fixing the mess.

The Senior Responsible Owner is the individual who must sign off on major decisions, and is responsible for project delivery. Heretofore, Tim Kelsey has been in the role, and we can see why he would like to pass responsibility onto others. Whether he’ll remain pulling the strings behind the scenes, is a different matter. It wouldn’t be the first time that Tim has looked for a human shield for his programme, having tried to persuade Geraint Lewis and more junior staff as a press buffer.

Hopefully a new external owner will accept the state of the mess they inherit, and as that new entrant, they may wish to ask some questions at interview:

1. If individually addressed letters to each patient are sent, will this be financially and politically supported by NHS England?
2. Are forward looking statements re free text true? How will the public position change over the course of my responsibility?
3. Are forward looking statements re DNA true? How will the public position change over the course of my responsibility?
4. What will happen to CPRD, and other research supporting datasets?
5. What is the state of the implementation of the more sensitive parts of the IGAR review?
6. What was the process that led to the BMA rejecting these proposals so emphatically? What concessions have NHS England offered to meet those concerns? Why do NHS England believe they failed?
7. care.data has had many benefits claimed for research, ie beyond the commissioning for which it is currently permitted. What is the current roadmap for consent for those? If they are so vital, why were they dropped in the first instance?

We would hope that any successful applicant understands why people would choose to opt out, and would not demonise them for that choice, nor consider them a “consent fetishist”. We do not believe that the personal choice of any candidate to opt-in or opt-out is relevant to their suitability for the role, but they must be able to demonstrate a human understanding of the range of reasons that an individual may make a different choice to theirs. We hope the interview panel will ensure this is the case.

We look forward to working with the successful applicant for the role when they take office. If you’re interested in applying, details are here, and feel free to ask the the above questions. If you get the job, we’ll be asking you for the answers.

Yesterday, medConfidential and others attended the HSCIC’s “Driving Positive Change” event, to briefly look back at the Partridge Review, and forward to future work of the HSCIC. The two major topics were communications of various types, and the proposed HSCIC “safe setting” where bona fide research could be conducted on data (currently subject to opt-out). Both of these things are welcome areas, and we seek to be closely involved in what happens next with the first public steps in the next week or so.

The Department for Health is running a consultation on “Accredited Safe Havens” for commissioning purposes, or, as they call it slightly less clearly, “Protecting personal health and care data”. The consultation gives NHS England companionship in terms of public engagement quality, and has led to a great number of puzzled looks by area experts. I’m currently attending a variety of meetings with a variety of organisations, and not only is no one really sure what the answers could be, few people agree on what the questions are intending to ask. This seems less than ideal.

Yet, as we are now in week 5 of a 7 week consultation, and no one really has a solid articulation of what the Department of Health are trying to do, I’ve put together this draft of a substantive paper on a way forward: “HRRDL’s for commissioning”. It’s based on previous work which has been adopted by HSCIC but after DH began their consultation drafting, which was as care.data was imploding around NHS England. If you think that the consultation as drafted takes no account of HSCIC’s progress since February, that’s because it mostly doesn’t. Comments by email are very welcome.

What is a safe setting? A safe setting is a physical venue where (usually remote) data can be accessed under tightly controlled and audited conditions. Restrictions are placed on who and what enters the room, what they do when in there, and what they can take out. This allows for research to be conducted on individual level records which have minimal protections (which, for health data, has other problems). They were previously discussed for legitimate research, along existing models. This paper takes the proposal further. We fully expect, and have no reason to disbelieve, that the optout codes for care data (and beyond) would be fully honoured. We intend that this proposal is fully compatible with the consent mechanisms that are in place, and that should be in place, and does not deny screening to those who have opted out of secondary uses. A safe setting can also restrict which individuals can see which data, which has implications for a granular approach to parity-of-esteem questions.

I don’t think that this is currently a final proposal so can evolve, (it’s dated so you can tell, and we’ll put a note here: when we do), and some may need more explanation, but if you’re interested in how we think commissioning data for invoice reconciliation and risk stratification (neither of which are direct care, so all come under the opt out process) could work in a way that is safe, consensual and transparent, I’d like to hear your comments below or to sam@medConfidential.org

Please note that making comments to us is not the same as responding to DH itself, which you can do online.