How can public dialogue keep up with the pace of policy?
The New Economics Foundation (nef) and the Centre for Science Education at Sheffield Hallam University (CSE) have just presented the findings of a two-year-long mass public engagement exercise on the use of Electronic Patient Records in the NHS.
In many ways the project can be held up as a model of how public engagement should be done. Nef produced Democs, a tool supported by Sciencewise-ERC, which is a deliberative card game played in small groups. They disseminated it to diverse stakeholders, from patient groups to medical students. A modified kit was also produced for adults with learning difficulties. In order to reach out to a broader range of adult participants, they also ran ‘On The Streets’ where passers-by were invited to review materials and give a response. CSE ran science lessons where students watched a short documentary and deliberated about the issues using role-play, research tasks and discussion exercises. At the end of the project in June 2010 an online poll invited all participants to vote on the key guiding principles on which the NHS should move forward. The process as a whole was transparent, objective and accessible.
However, reading the recommendations from the project now, they seem somewhat disjointed with the current policy climate, which has itself seen some recent changes. Patient website Healthspace was halted, and the core of Electronic Patient Records – the national Summary Care Record database - has been reduced. The other arm of the programme – the Detailed Care Record - has also been stopped. In April it looked like the whole NHS programme for IT was either to be scrapped or seriously cut back by all three parties. It has been announced that the Summary Care Record will continue, but it is not yet clear what will happen to other aspects of the project.
This is not to say that the results of the dialogue are not worth it. They still provide useful insights on the role of confidentiality, control and consent in relation to peoples’ medical data. However, the public giving these recommendations were not taking into account more recent policy changes.
This example highlights both the difficulty and the importance of upstream engagement. Good quality dialogue takes time, especially on such a complex topic with so many diverse stakeholders. It is even more important in these cases that public dialogue takes place as soon as possible so that it can have a meaningful impact on policy.