It is curious how life often brings us back to places once well-trodden but then lost to us for one reason or another.
Last week I was in Stockport. I have a vivid childhood memory of my mother taking me by train to have my broken arm re-set and put in plaster in the hospital there. A career-ending football injury as I like to tell people now.
I recall being pretty shaken up by the scenes in A&E. A full waiting room. A great deal of blood. A teenage girl with cerebral palsy in a great deal of distress. Grime everywhere. Us sitting on horrible grey plastic chairs with legs that bend when you sit on them. Little daylight or hope anywhere.
My return to Stockport was a happier one I am pleased to say. It took me to the town hall – I like town halls as you know!
This one is particularly nice. It bursts with civic pride. The loos are a delight of Victorian design. Every brick of the building seems to want to tell a story of the coming together of citizens to improve the world: through technology, social reform and democracy. Important bedfellows then and now. It’s corridors and staircases echo with history. I felt that if I put my ear to the wall I would hear the voices of yesteryear debating the future of their town.
The occasion of my visit was to hear the results of citizens’ jury work that the University of Manchester e-Health Research Centre and Information Commissioner’s Office have been doing on health records. Two juries consisting of 34 volunteers and 5 experts had been convened with one mission in mind: to consider the extent to which patients should control access to patient records? Over the course of their three-day deliberations the juries became more positively disposed to the idea that the NHS should be allowed to create health records but that patients should be allowed to opt-out. They also identified similar criteria for determining who should have access to health records. Organisations should be able to demonstrate that their use of the data met a clear public benefit and that it was safe in their hands.
Earlier the same week the Wellcome Trust published a fascinating study – qualitative and quantitative – of public attitudes to health records being shared with commercial organisations. Again, those asked showed a clear reasoning in deciding who should have access to their records, wanting to know what public benefit it would serve, the anticipated outcome, and how those who would hold the data could show it would be in safe hands. Based on this logic they were likely to be more favourably disposed to a pharmaceutical company having the data but drew a red line where marketing companies or insurers were concerned. In the survey work a slight majority of people (53%) said they would be happy for their data to be used by commercial organisations if it was for research.
It is good to finally see public dialogue work emerge in this area that is motivated by a genuine desire to explore and understand how people think about the issues. That has not always been the case. In fact, more often than not, it has felt that such exercises were set out upon simply to prove a point.
Contrary to what some people would have us believe these latest studies show that – given the time and opportunity to consider the issues – the British public are deeply rational in their response to the questions being posed of them. In my view, any draining away of public confidence on this subject is not because people lack a Nobel Prize. It is because they have been ill-served by the body politic in terms of the information shared with them and the disrespectful way in which it has been delivered.
The Wellcome Trust report also shows that the public have very little understanding or awareness of how health records are generated and used. So it was good to hear the National Data Guardian (NDG), Dame Fiona Caldicott, speak so forcefully at the Stockport meeting on the need for robust and on-going public engagement and communication to support further policy developments in this area. As you may be aware, Dame Fiona has been asked by the Secretary of State of Health to look at the issue of consent among other things. Her report can not be too far off.
As I came away from Stockport, I reflected on the fact that what I had heard during the meeting had reinforced many of my beliefs on this subject.
But, more so, that a first principle to how we engage and involve the public on this subject is that every citizen should have the right to information and a conversation that helps them understand the issues, the time to take a decision that feels right for them, and in the knowledge that it will be respected whatever they decide.
That could be the real revolution in data.
I was on the advisory board for the Wellcome Trust study cited above, and a member of the Farr Institute International Advisory Board. The Manchester e-Health Research Centre is part of the Farr Institute.