No newsletter this month, so we thought we’d do a quick round-up on the blog of some things you may wish to read, “chillaxing” on a beach.
What difference does 10% make?
Dribs and drabs of information about care.data are beginning to leak out. Many may have missed the Minister for care.data, George Freeman MP, give a very carefully couched answer to Parliament about the number of patients who have opted out.
As you may recall, the last time anyone said anything to Parliament directly was when Kingsley Manning suggested “about a hundred” patients have been affected by NHS England’s ‘Type 2’ cockup. His follow-up written answer “actually it’s more like 700,000” was somewhat buried by being published in the run-up to the Election.
Mr Freeman, however, had the more difficult task of announcing a much bigger number – which he did by the time-honoured tradition of hiding behind percentages and ranges. Even so, his answer meant we had to update our own estimate to between 950,000 and 1.6 million.
We had increased our estimate based on an extraordinarily detailed series of FOI requests by Dr Neil Bhatia, which he very kindly shared with us (and others). Dr Bhatia’s figures showed that – while what Mr Freeman told Parliament was true in as far as it went – the picture was somewhat more complex, possibly even alarming.
Mr Freeman limited his comments to a range which he said “the majority fall between 0.5 – 2.5%” opt outs. Dr Bhatia’s figures show quite a number of practices with opt outs in the 4 – 6% range, running as high as 12% or even 14% in a handful of practices. And don’t forget, these are the pathfinders – the volunteers, the supposedly keen practices. No one has detailed figures from any urban areas yet, as NHS England is still struggling to recruit practices in Leeds.
Talking more about care.data (not just on a beach)
One thing that does need to massively improve is the way that care.data is talked about.
NHS England is still far too fond of hiding its dodgy commercial re-use ambitions behind the figleaf of research. At the recent “son of care.data” events – officially, NIB ‘Work Stream’ 2.2 – the only secondary use that NHS England really wanted to talk about was research; offering very little to those asking “What about the other uses?”, such as commissioning.
If you happen to be planning a discussion of care.data after the holidays, here are some thoughts we hope are useful.
There are some sensible discussions going on, and a number of positive developments we hope will be announced in the months immediately following the summer – not least HSCIC’s ‘fix’ for the yet-to-be honoured ‘Type 2’ (9Nu4) opt outs. There are several legal instruments in the pipeline: new Directions for the care.data pathfinders and patient objections; CAG Regulations establishing promised safeguards and sanctions, and closing “the promotion of health” loophole; and hopefully, “at the earliest opportunity”, primary legislation to put the National Data Guardian on a statutory footing.
Let’s hope NHS England reflects over the summer on how little its ‘head down, keep people in the dark and keep rolling at all costs’ approach has achieved over the past 18 months – except further eroding public trust – and starts meeting some of the many promises it has made.
You may have missed the quiet announcement, just before Jeremy Hunt went off on his holidays, that DH’s troubled arm’s-length body, Monitor, and the NHS “Trust Development Agency” (that’s Trust as in NHS Trusts) are to merge, under the new brand “NHS Improvement”.
When it comes to Monitor’s worldview on data, things can only get better; it seems to have been taking care.data as a handbook, rather than as a salutary lesson. So the new NHS Improvement may provide a springboard for a huge leap forward. Or backwards, depending on crucial choices that must be made. Will they follow NHS England’s past-its-sell-by-date worldview, or the best thinking and actions of the reformed and reforming HSCIC – and what about patients? We’ve pondered the potential…
Beyond this new merger, there are other areas that could be improved – not least the introduction of a data incident protocol aiming to provide patients in data crises with knowledge rather than media management, and to aspire to something more ethical than mere DPA-compliance. Also better consensual, safe and transparent sharing of medical records along care pathways, for patients’ direct care.
Use of data
With regard to the proper use of patient data, we’re still awaiting more details of what the high street pharmacies are looking to do with the Summary Care Record. Three were asked, two denied they were planning to abuse it. And our ‘old friends’ at PA Consulting have come out in their defence. (You may remember PA Consulting as the ones who made money uploading 25 years’-worth of our hospital data to Google, not to mention previous financial benefits from servicing the old Home Office ID cards scheme.)
One bright idea in the run-up to the Election by someone who probably hoped they’d never be responsible for implementing it – think mistakes like the Poll Tax – was to use people’s medical histories to deny them benefits. As we’ve discovered, sometimes “high level” political ideas interact badly on the ground; we wrote to David Cameron recently about just such an initiative, done in his name.
The Government gave the ‘employment problem’ to an Independent Review Panel, which currently has a consultation out. If you have a free moment, you may wish to respond to Question 7 (amongst others).
medConfidential is concerned that as DWP and HMRC are reengineered over the next 5 years, there’ll not only be more and more temptation, but a now practical ability to do similar things.
We would like to think that DWP and HMRC will take a decision that someone in the NHS is capable, though it seems to refuse to accept those same decisions when the professional outcome goes the other way. This type of discrepancy forms the basis for our draft submission to the Comprehensive Spending Review – if you have any comments, please e-mail them to firstname.lastname@example.org
In September, we’ll find out what happened when the deeply flawed Directions for the care.data pathfinders were considered by the HSCIC Board. If there were to be further delay, all the dates that NHS England has been announcing for the last month or more will have been misleading. Let’s hope NHS England didn’t screw anything up due to lack of consultation…
Phil’s on holiday for the next few weeks, so Sam’s really hoping NHS England doesn’t do anything catastrophically stupid before September. For that matter, NHS England probably is too…
We hope you enjoy your summer!
Sam and Phil