The result of a two-year public engagement exercise on electronic patient records has been overtaken by a rapid government review of policy.
The Who Sees What? exercise was carried out to help people discuss and decide about the way the NHS uses their patient data.1 But just as the report [1] was published, a two-month review [2] commissioned by Health Minister Simon Burns reached conclusions3 on the Summary Care Record (SCR), designed to contain core patient information useful in emergency situations.
Annie Quick worked on Who Sees What? at the new economics foundation (nef), and has since written [3] about the difficulties of upstream public dialogue. ‘As soon as we know what [the policy issues] are, they’re already moving,’ she said.
Upstream
Stephen Whitehead of nef described Who Sees What?: ‘We created a ‘Democs’ [Democratic meeting of citizens] deck of around 100 information cards. That means that people who don’t have background knowledge… can have a useful conversation without an expert present.’ Around 6,000 people were engaged through On the Streets (public stalls with questionnaires), or at secondary school.
One key finding was that the group felt strongly there ought to be a right to opt out of data-sharing systems like the Summary Care Record.
Charles Gutteridge, National Clinical Director for Informatics at the Department of Health, said that the current government policy on SCRs had been developed by two groups looking at content and consent: ‘There were patient representatives in [each] group, and in the consent group… there was wider representation of ordinary citizens as well as patients.’ One outcome is that an optout form will be included in mailings informing patients of the SCR, which wasn’t done before. It is also possible for SCRs to be viewed using the HealthSpace [4] website.
Ongoing
Gutteridge is reassuring about past and future engagement: ‘There has obviously been a debate over the last four to five years, which has involved patients, professionals and others... There is also an [ongoing] annual programme of engagement events, [mostly] round table events of 80-100 people with representatives from a wide range of society.’
Quick writes that it is important for public dialogue to take place as soon as possible so that it can have a meaningful impact on policy. However, she said she is not despondent: `A project like that leaves lots of people with a much deeper understanding and they then carry on with that engagement process… following policy developments and holding government to account.’
1 The Wellcome Trust funded the new economics foundation (nef) and the Centre for Science Education at Sheffield Hallam University (CSE) to undertake the exercise. See http://whoseeswhat.org.uk/ [5]
Research Councils UK has drawn up a Concordat [6] for Engaging the Public with Research, to provide an ‘unambiguous statement of the expectations and responsibilities of research funders in the UK’ to foster ‘a research culture that values, recognises and supports public engagement’.
Support and welcome
‘We’ve been absolutely thrilled with how supportive people have been with this,’ said Dr Kerry Leslie, Head of RCUK Public Engagement with Research. `We’re adding signatories and supporters all the time.’
Researchers have also given the Concordat a cautious welcome. Dr Andrew Pontzen, research fellow at the University of Cambridge, does outreach work in his spare time. ‘The Concordat is a step forward in putting more emphasis on outreach,’ he said. ‘At the moment… outreach activities are really not recognized in terms of careers and career progression for academics.’
Leslie agreed: `Researchers who do public engagement can feel very much on their own. We want research organizations to reward and recognize public engagement that is going on.’
Global job market
Pontzen thinks the UK is ahead of other countries in this but warned: ‘The jobs market [for researchers] is global. This kind of statement doesn’t affect the priorities of grass-roots researchers because they know their next job is unlikely to be in the UK.’
Leslie responded that the Concordat is a first step. ‘We are encouraging other countries to take similar steps. Also, the case studies in our ‘What’s in it for me’ brochure [7] show that researchers that have done public engagement have found it valuable personally for their own skills development; it’s raised their profile within their organization and internationally as well.’
Defining agreement
Brian Wynne, Professor of Science Studies at Lancaster University, would have liked the Concordat to say more about how the public can shape research agendas. ‘That’s a bit of a hole in the Concordat,’ he said. `But if they’d talked about those more ambitious things then some of the signatories might have shied off.’
Leslie said that they do include ‘creating opportunities for the public to inform research questions being tackled’ as part of the document. However, she mentioned the difficulties in producing a single definition of public engagement with research: ‘That’s why we say that it’s for that research organization to have their own understanding and definition of public engagement so they can decide on a definition that’s appropriate for themselves.’
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 Dr Joanna Carpenter is the Shorts Editor
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