December 2019 — medConfidential
There should be a price for misleading public statements about the NHS, whether about data or everything else.
Since our last update, and our first update in 2014, what a Data Usage Report should contain has reached consensus. The NHS has made some progress – not that you as patients will have seen any of it – and while NHS Digital calls it a Statement, rather than a Report, that is probably a better word.
If you e-mail NHS Digital and ask them, they will now tell you how data about you has been used, to whom it has been sent, and hopefully, the places where your Summary Care Record and the new ‘National Record Locator’ have been accessed for you. NHS Digital still doesn’t know everything, but it is progress. Whether this will roll out to appear on the NHS App, and on NHS.UK is a different question. Mainly a political question for NHSX – NHS Digital would prefer to avoid the transparency.
Now NHS Digital can do this, we turn to the question of the quality of the content. Anything at all is clearly better than the status quo of nothing, and “at will” is far better than “by request”. medConfidential also has an example of what this would look like across the rest of Government (i.e. behind a GOV.UK Login) – as the approach we’ve taken applies for data used across Government, not just health data.
How to talk about data projects
Over the last year, our friends at Understanding Patient Data and Use My Data – and others – have done quite a bit of work on how you explain data usage to people.
While application forms may contain ‘lay person summaries’, these are of variable quality. That’s not to say that the current ones aren’t a good start – they prove the process can work, and they will get better over time. Conversations about improvement will continue to be hypothetical until patients can actually see how their data is used, at which point quality will go up.
The work of Understanding Patient Data (and friends) shows that these explanations can be good. Whilst various agencies can take their own view of ‘good’ communications, once the feedback loops exist and are running, the incentives to get better quickly kick in. With its limited numbers of projects and outcomes, the cancer registry has shown that assisting some projects as needed can be done without the need for extra resources.
For projects that make it into the press, the existing NHS comms team who write the ‘NHS health news explainers’ can also assist; showing how to tie the legitimate uses of data more tightly into the benefits of research.
There’s plenty of expertise to help make the explanations for patients really good, but they must be good enough for now – if they aren’t, then the data use should not have been approved! – and therefore the biggest block on improvement is simply not having started to show people how data about them is used on NHS.UK.
Of course, medConfidential still shows everything it can on TheySoldItAnyway.com… and commercial entities are still getting data. As NHSX ramps up for 2020, does it really want the only place patients can readily see how their opt out was respected (or not) to be at TheySoldItAnyway.com?
Another attempt to collect your GP data is coming. While none of the details are finalised, NHS England is quoting BMA as saying it’s “care.data done right”. (It is unclear at this point whether that quote is from “care data day” or elsewhere.)
Will the 97% of people who do haven’t said no to the desire to “use my data” for purposes beyond their direct care be able to see how their data is used? How confident are NHSX, DHSC and NHS England that what they tell the public this time will be matched by what NHS Digital is told to do, and what it actually does?
Information will be provided to the public about care.data 2; the question is whether NHS England and DHSC tell people, or we do. As before, medConfidential will tell people the truth, with evidence – whereas Matt Hancock’s choices in the recent election suggest he may choose a lower standard.
There are of course legitimate reasons to use patient data, especially the data of people who wish it to be used. If the programme is consensual, safe, and transparent, then it will be scrutinised and the outcome can be positive – will you know how your data is used, and how your choices are implemented? Do you have the facts you need in order to make an informed decision on how your and your family’s health data is used?
The opt-out model of Organ Donation
We are approaching half-way through the communications period for organ donation in England to become an opt-out rather than an opt-in process.
medConfidential has not yet seen any figures published for the effectiveness of this national communications campaign – nor how many people have taken action as a result, both opt-outs and explicit opt-ins – but those ads we have seen so far have all been vague and non-specific.
The memories of Alder Hey haven’t faded, and we sincerely hope DH / NHSBT ‘step up a gear’ so people really can make an informed choice before death, and avoid unnecessary stress and suffering for their loved ones.
How the communication of the organ donation opt-out programme succeeds or fails will likely demonstrate whether the care.data2 process will succeed or fail too. With luck, the Secretary of State won’t be in so much of a rush to grab your medical records that, in haste, he undermines organ donation too.
As has always been the case, NHS England and DHSC could have a data system that is consensual, safe, and transparent. The question is whether they will duck the hard choices and make you pick up the pieces they wanted to avoid.
The Home Office
With the Government proposing to move Immigration and Borders responsibilities out of the Home Office, a decision will be required on what happens to all of the toxic soup of data agreements between the Secretary of State and the Home Department for those purposes.
While still meeting the obligation of transparency, simply cloning and rubber-stamping each data sharing agreement for such purposes would be a terrible outcome. We may yet see improvements on the toxic legacy of the last nine years under the previous Prime Minister’s worldview – but this will require significant changes, notwithstanding cancellation.
If the data flows do continue, then this Prime Minister is clearly not interested in solving the problem that sees his Government threatening to deport scientists due to a Government typo. Number 10 will either decide to fix this as part of its Machinery of Government change, or it will decide to keep things as they are. The message will be clear either way.