Lack of clarity around data sharing risks ‘irreparable mistrust’, NHS Digital chief warns
Absolute clarity is needed around how the NHS will use patient data or we risk “deep and almost irreparable mistrust”, the NHS Digital chief has said.
Sarah Wilkinson said the NHS needs to formalise its position on the secondary use of patient data in order to fully benefit from the insights already available within the national data set.
Speaking at a Kings Fund and IBM Watson event on artificial intelligence in healthcare on Tuesday, Wilkinson said we need to “directly address people’s concerns by laying out our ethical approach to dealing with data and providing absolutely clarity on how we intend to use health data”.
She warned that “political interest” could interfere while there is no clear guidance.
“Today the legislation that governs the use of health and care data in the system allows for multiple interpretations,” she told the audience in London.
“There’s a danger that judgements are made about health and care data that don’t accord with the innate understanding of how the NHS will use their data, and I think if we get that wrong there will be a deep and almost irreparable mistrust.
“I believe we need a much more open debate about balancing the risks and opportunities associated with different uses of this data and we need to formalise our position on acceptable uses so that we can be really clear with citizens.”
Ms Wilkinson said the lack of clarity around the use of data was “slowing us down” and that mistrust in the system could have a “dramatic impacts” on quality of research.
“We have this internationally unique data set and now we have the tools to derive insights from it that have never been previously possible,” she added.
“But we are not going at this opportunity fast enough.
“It’s really clear that there are insights available today, from the data in the system today, which would enable us to treat patients much more effectively today, but which we haven’t yet extracted.”
The NHS is currently reviewing it’s confidentiality code.
An inquiry was launched into the memorandum of understanding (MoU) on data sharing between NHS Digital, the Department of Health and Social Care and Home Office, which allowed the Home Office to gain access to patient data – including non-clinical information – for the purpose of tracing immigration offenders and vulnerable people.
Senior members of NHS Digital were later criticised for refusing to stop disclosing patient data with the Home Office.
The MoU was suspended in May 2018.
6 Comments
We all talk far too much about data as a ‘commodity’ in such vague nebulous terms that mean nothing to my friends and family.
Let’s start to make it more meaningful to our Mams and mates, just like Joe’s been trying to do with the Great North Care Record. I’ve attached an example from 2017 of how I try to do it in my own life as a Type 1 Diabetic, Dad, son, part-time Carer and Sunderland supporter see: https://fabnhsstuff.net/fab-stuff/digital-leadership
Unfortunately Ms Wilkinson seems to have a Orwellian view of information in that once the powers that be have information they can do what they wish with it. Thought is has real side benefits, tracing immigration offenders and vulnerable people, the reason that the information is given in the first place is to create better patient outcomes.
So when they speak of research why can not the data be simply anonymise or use ethic committees to have patient identifiable data used. There are already many safe, proven ways for clinical research to use patient data for patient outcomes.
I think what Ms Wilkinson is actually after is the ability to use patient identifiable data for other non patient/health related undertakings.
That is the real issue here is that the statement
“It’s really clear that there are insights available today, from the data in the system today, which would enable us to treat patients much more effectively today, but which we haven’t yet extracted.”
is actually untrue as this can be done today for clinically appropriate patient or public health related needs.
Ms Wilkinson is not about that it would seem and is using the debate as a stalking horse…..
I really feel that almost everything she says betrays the fact that she has not changed one bit, as I have tried to point out by highlighting the statements that betray her attitudes. Nothing can be built on this except more distrust. I hear what you say, Joe, but I just don’t see it there on the page. She simply does not understand that talking about building trust is vacuous if everything you say and do undermines trust. Sometimes you have to knock down what is rotten to the core before you can build anything. The first thing they need to do is to stop the lying and the bullying, rather than “formalise [their] position”. That, in my view, is the last thing we need.
I feel your pain Bertl, but what if Sarah Wilkinson has learnt the lessons of the past and is genuinely trying to find a new ethical, clear way forward? I fear you may be in danger of missing an opportunity to change the future if you just disengage. As Jonny Rotten said “anger is an energy” but it doesn’t achieve anything if not applied to the business of building a better future.
The key thing is that all are treated equally, this does not an academic debate, what it requires is for stuff to be DONE @the national level. Technology, digital should be being used to offer an equal service to all. I am technical and my specialty is DATA, it upsets me when I do not hear national leaders saying that a national approach is required i.e. people can not have one provider doing one thing and another doing another thing, that is not acceptable within the NHS that I believe in.
“The NHS is currently reviewing it’s confidentiality code.”
The NHS “confidentiality code” is extremely simple. There is no confidentiality in the NHS.
” if we get [the use of health and care data by the NHS] wrong there will be a deep and almost irreparable mistrust.”
The NHS has already created deep and permanently irreparable mistrust. There is no “almost” or “will be” about it.
“. . . we need to formalise our position on acceptable uses so that we can be really clear with citizens.”
No. You need to listen to citizens on what are acceptable uses.
“We have this internationally unique data set . . .”
As long as the NHS thinks that it owns our heathcare data and can tell us what they are going to do with it, they will only deepen the already deep and permanently irreparable mistrust.
When Sarah Wilkinson gave evidence to the Parliamentary Select Committee on Health (now the HSCC), concerning the MoU with the Home Office, her attitude was one of the most chilling things I have ever witnessed. She clearly still has not learned anything whatever. The effect of this woman opening her mouth can only be the creation of deep and irreparable mistrust. How can anything involving care (of any kind) be in the hands of someone like this?
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