While there is a lack of trust in the government, Dr Layla McCay, NHS Confederation’s director of policy, argues that citizens are not opposed to having their data used for the purposes of innovation.
To realise the ambitions of its Life Sciences Vision, the government recently announced that £200million would be invested into the development of Trusted Research Environments (TREs) the aim being to provide researchers with better access to NHS data, in shorter time frames, whilst maintaining the highest levels of privacy in order to pave the way for making advances in cutting edge medical advances and treatments.
TREs do indeed offer the gold standard when it comes data security offering a way for data to be stored and used for research without data being simply given to those wishing to make use of it, with researchers having to come to the data instead of the data being given to them.
This also means that TREs offer a level of transparency about who is accessing the data, how they plan to use it and what the outputs of this use will be. Whilst an oversimplification of how TREs work, this should, in theory, give further reassurance to the public that their data is safe and being used in ways that they would support.
However, after the fallout of GP Data for Planning and Research (GPDPR) programme last year and Care.data before that, the public’s confidence in the government’s uses of data is at an all-time low. In such an environment can citizens really believe that TREs will live up to their name?
Building up confidence
The Secretary of State for Health and Social Care, Sajid Javid, has recently made positive remarks about the need to invest in building public confidence towards data re-use, and while we do not yet know how this new investment will be distributed, we can hopefully be confident that the government will learn from previous mistakes and anticipate the risks current public sentiment on data sharing poses to the success of this project.
It was the failure to engage the public, listen to their concerns and act upon their wishes which gave the impression of a government attempting to make a grab for the public data to sell to the highest bidder which ultimately led to the downfall of GPDPR.
However, this has not been a solely UK or data policy challenge, robust public engagement has historically always been an under resourced asset in policy building across the board.
Thankfully this is changing, and the NHS Confederation has been involved in a number of data specific public engagement strategies across the UK and Europe that can provide insight and opportunity for the UK.
One example is the ongoing development of the European Health Data Space or TEHDaS. TEHDaS is an EU joint action to develop the infrastructure and legal and ethical considerations that must be addressed to enable the sharing of health data across national borders for secondary purposes.
What we have seen from our participation so far is that despite the current low trust in government use of data, many citizens already share the desire for health data to be harnessed in the pursuit of innovation.
The NHS Confederation is currently working in partnership with public bodies in France and Belgium to run a citizen’s consultation for the public to share their views about how their health data should be collected and used. When the consultation concludes in April it will provide insights about how citizens in the three countries want to be engaged. For now, the consultation is still underway; you can share your views here.
4 April 2022 @ 23:11
Some citizens do want their data shared. The ones who will stop your sharing project, DON’T and they are clever, committed and very often annoyingly right about the law. They don’t want engagement , they want control. There for the asking, not the taking
Arte we really doing this again?
8 April 2022 @ 17:40
Yes Joe, it would appear we really are.
The words of my father that I actually listened to were “stay in the NHS long enough and you’ll see the same idea come round again under a different name”. Because the leadership of NHS churns completely every 5 years, no-one seems able to learn from previous attempts to do the same thing. Maybe there are no lessons learned docs sitting on the intranet?
I was at an event this week where everything in England seemed to heading towards a regional model. The boundaries sounded awfully closes to the pre-2014 SHA ones .
Year zero all over again
4 April 2022 @ 10:15
That’s lovely Layla, but you fail to mention the government’s / NHS England’s repeated refusal to acknowledge public concerns on this issue, and to try and drive through central data initiatives opportunistically. The GPDPR GP data grab didn’t come out of the blue. It came from the same thinking, and made exactly the same communications “mistakes” as care.data (which itself failed to learn from the introduction of the NHS Summary Care Record, back in the day). What’s the phrase we’re hearing a lot at the moment? “When someone tells you who they are, believe them the first time.” If you didn’t want to believe them in the context of care.data, or the NHS England MOU with the Home Office, or GPDPR, what about Covid and Palantir? Any sign of the IG rules suspended during the pandemic being reinstated? Or the promise on consultation on the further involvement of Palantir in the NHS being honoured? The public have very good reasons for not trusting the UK government and the NHS’ central bodies on the use of their health data and that’s because they keep on abusing it. People probably do want to help research and innovation, but trying to start a “debate” on this topic from those principles and not the cold hard facts is naive, at best.
1 April 2022 @ 13:34
There is luck of trust in Government – you are so right. The good thing is that we can vote them out next time.
There is much bigger issue the article is not telling: There is luck of trust in NHS, No trust in Doctors, No trust in medical professionals, no trust in science. All have been lost during last two years of complete blackout for honest discussion on the healthcare in general and on the last remaining respiratory illness in particular. What we are going to do with that?
“Citizens do want their health data to be harnessed for innovation”…Ha-Ha-Ha…Do not even start on the matter how personal data is secure with all high-tech. Nothing is safe. Once the data is out – the privacy is ended.
And who are these “public bodies in France and Belgium”? Are they are the ones who intimidated their people into the participating in testing of the latest pharmaceuticals products by denying people from normal life?
May I somehow opt out from all these nonsense and may I have the share taken for this from my taxes be return back?