Actually that’s not quite true because, as is not uncommon with these things, the evidence session I attended today was more of a discussion, and a very good one it was too. But I did more or less cover the following points. At the end we were asked to express one wish about what happens next. I had a two-part wish:
- That the NHS Constitution consultation does not become a referendum but is seen as the beginning of a deliberative exercise with the public and patients.
- That the governance system which emerges enshrines the role of the public as effective co-custodians of good research.
‘Caldicott 2’ speaking notes
The public and health research
Strong public support for health research – ‘instinctive and altruistic goodwill’ towards it – emotive response not too dissimilar to that which causes people to donate to research charities. Nature of a person’s relationship changes as they begin to have direct contact. Value needs to be better articulated, however, and we need to do a better job of harnessing support.
But low awareness and understanding of how it works generally and, even more so, of particular elements such as use of patient data. Clearly need to do more to change this but not sure that ‘the fluoridation of water’ population-wide approach to raising awareness will get us very far. What happens via NHS and Trusts in the context of care much more important – see below.
I suspect people, however, would take issue with the definition of research that some suggest. Would be an expectation of delivery in terms of treatments, new interventions etc not just advancement of scientific knowledge and understanding. Real need to de-jargonise information governance debate and try to arrive at consistent definitions and terminology.
Context for people’s individual participation in research is changing. Now being framed as a ‘choice,’ as an entitlement as part of their care and treatment – NHS Commissioning Board Draft Mandate. Vision of ‘citizen-driven’ research where people are asserting this right with their doctor.
Changes dynamic. People will have greater expectations over their rights as well as responsibilities and I am not sure we have thought this through sufficiently within the research community. It’s no longer a simple exchange or gift relationship. Support is not unconditional.
Strong case for patients and researchers to begin to ‘codify the expectations’ that people can have about their participation and involvement including how their data is used. Public meetings I have done recently suggests growing frustration over things like consent and the lack of a relationship feel to their interaction. Something I am looking at in my role at NIHR.
Building on the evidence
Have been involved with a number of exercises to gather public opinion an insight into public perspectives on information governance – ‘Your medical records saves lives,’ Academy/AMS report.
Evidence is indicative of public support for sharing data and understanding of benefits but important we don’t overwork or overcook it as if it is a ‘mandate for change’ in itself. It merely gives us license to examine further with them how policy and practice could change. That is why NHS Constitution consultation so very important.
4 small points about the ‘Your medical records..’ exercise. First, people assumed their records were being shared anyway. Second, it was a deliberative exercise which enabled people to have their concerns explained away. Third, the biggest barrier to change seemed to be their GP. Fourth, in designing the leaflet people really put a premium on simple, direct information but with clear signposts of where to find out more according to their interests and needs.
Welcome the consultation. Need to take a deliberative approach to it. Important to have right mechanisms to hear and understand what people are saying, not just organisations. Also important that we involve the public in the design of the consultation, the framing of its questions and the evaluation of the responses.
Building trust – consent, research governance and public involvement
Three key elements:
Important for people to feel in control of their information and its uses. So, absolutely critical that people are clear about what is being proposed, the pros and cons of opting out, what this means in practice, how data use is going to be monitored etc. In the Facebook era it seems unwise to have a system which does not allow people to choose areas of information they are happy to share, review their decision at appropriate points and re-boot their involvement etc. Or if not, the reason why needs to be clear.
Public involvement in the overall research governance is important to getting the system right from a patient perspective and will help instil trust – patients are effective partners in ensuring good custodianship of research.
Important to have a governance system which is less about transparency and the production of data (as opposed to information) and more about the ability for people to track how decisions were made, by whom and why. Plus what is done if things go wrong.