At Sense about Science, we strongly believe that scientists should trust the public with their research, and that key audiences should be involved, and involved early. Over the last few years, we have helped several groups of scientists to communicate their research findings simply and accurately through public engagement projects.
Our role in these partnerships is two-fold: to prevent misunderstanding and ensure that the public get the most out of the results. We prioritise projects that we feel are in the public interest, particularly those that have potential to be misinterpreted by the public, journalists and policy makers.
These projects have been diverse, challenging and worthwhile. In 2014, we partnered with Small Area Health Statistics Unit (SAHSU) on the release of their potentially controversial Atlas mapping potential environmental hazards and select health-outcomes across the UK over a 25-year period. Last year, we worked with the UbbLE research team to design their public-facing website which generates the risk of mortality for an individual based on a series of questions.
And just last month, we were part of a collaboration headed up by Dr Christina Pagel, UCL and Professor David Spiegelhalter, University of Cambridge to develop a website that explains children’s heart surgery statistics.
Our fundamental role is to bring in the key audiences that should be involved in developing the resource – the patients, families, users, policy professionals and journalists that rely on, use and need the information. We recruit and facilitate user-testing workshops where we invite these potential users to feedback on the content, language and usability of the information, throughout the project. Their feedback shapes development of the resource into something clear and understandable.
Why this matters
Time and again we have seen researchers surprised by how an audience has interpreted information differently from expected, then come to recognise why these groups need to be included from the outset.
And, of course, the impact that involvement has on those key audiences cannot be underestimated. Bob Ward a NCHDA patient representative and grandparent of a heart patient commented on the children’s heart surgery website, “Congenital heart disease in children has a massive impact not only on parents, but also on siblings, grandparents (like me) and other relatives. But there have been occasions when sensational, misleading and scary headlines in the media have caused enormous and unjustified concern. This website goes a long way towards providing clear, accessible and objective information to everyone, professionals and public alike.”
More to do…
These experiences, both successful and rewarding, have only shown how much more we have to do to encourage other researchers to adopt this approach. When data is made available it also needs to be understandable for non-specialists. If you are planning a public resource that shares data or research and would like to discuss your public engagement approach or partner with Sense About Science, do let us know at firstname.lastname@example.org.
Joanne Thomas is Projects and Events Coordinator and Emily Jesper is Head of Partnerships and Governance at the charity Sense about Science. Find out more about their work at www.senseaboutscience.org.