From time to time, when stressing the importance of public engagement with research, I find myself challenged with the question 'why bother?'. The current debate about care.data – the highly contested attempt by the UK Government to improve access to patient data – provides a sharp illustration of why engagement matters. The nature of the current challenges around care.data, and what's at stake have been well set out by others. I want to stress at particular point: at the heart of this debacle lies a failure to engage.
The communication has been poor and incomplete, but just as importantly there has been little attempt to gather or listen to people's views. I hope that this can be addressed in six month hiatus that the project now has. But it is essential if any engagement is to work that the Government signals that it will listen, and that might mean imposing more restrictions on the use of health record data than researchers, business or the Government itself would like.
In thinking about public engagement with the care.data project, there is much to be learned from the dialogue on open research data that I helped to steer when I worked at RCUK. Although the dialogue was about openness of data that had been collected specifically for the purposes of research, issues about personal records that are collected for other reasons surfaced. Many of the conclusions that the participants came to have clear implications for care.data. For example, it was clear that:
Consent and in particular confidentiality around personal data were highlighted as prominent public concerns. Whilst generally, with appropriate governance provisions, participants were relaxed around data confidentiality, a significant minority were very concerned about this issue. A number of points were raised in this context:
- consent for data reuse may be conditional
- combining data may reduce confidentiality
- consent for reuse may lead to data being used for purposes or by companies which individuals do not agree with
- lack of clarity around the ownership of linked data sets could create problems around data use and consent.
All of which is very relevant. A further conclusion (with my emphasis added) was that the participants felt that:
The public had the right to: have informed consent for personal data use; have some overview and scrutiny of governance arrangements around personal data; have research data funded by the taxpayer reused for collective gain; have research data in the public interest disclosed
This point about collective gain is also worth reflecting on, given the widespread concerns expressed specifically about private interests gaining access to healthcare records.
What happens next with engagement around healthcare records is hugely important, not just for the use of data to improve health and well being, important as that is. The handling of this debate has the potential to colour the whole future of open data. It is time for the open data advocates to listen: open data has huge potential but we need to work within the constraints that the public rightly seeks.