When it comes to involving the public and patients in research matters-they should be involved, and they should be involved early in the process. At Sense About Science, we see this as a core responsibility of researchers, and over several years have established a number of successful public engagement partnerships to encourage and support researchers to trust the public by sharing their findings and making them understandable.
A diverse portfolio
Our remit is to promote understanding and use of scientific evidence and advocate openness and honesty about research findings. We focus on socially and scientifically difficult issues where evidence is neglected, politicized or misleading. Our public engagement portfolio reflects this; we prioritize partnerships in these difficult research areas. The projects we take on involve the release
of information that has the potential to be misinterpreted by the public, journalists and policy makers, and/or are cases where our involvement provides an opportunity for the public to access evidence that they would otherwise miss.
As a result, the projects we’ve been involved in have all been challenging and important, the latest of which launched in June 2016. We were approached by Dr Christina Pagel, UCL and Professor David Spiegelhalter, University of Cambridge to work with the public to co-develop a website that explains how children’s heart surgery is monitored. The website, Understanding Children’s Heart Surgery Outcomes, was launched by Christina in response to previous misinterpretation of these statistics, which led to confusion and unnecessary anxiety for parents and families of children undergoing surgery. To prevent this recurring, Christina established a team to develop a website which would transform this important information from simply being available, to also being accessible to these key non-specialists audiences.
Our recent partnerships have also included working with the UbbLE research team last year to design their public-facing website which generates the risk of mortality for an individual based on a series of questions. And 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. You can read more about our other partnerships here.
Facilitating the discussion
Our role in partnerships is two-fold. Firstly, we recruit the key audiences and evidence-users that should be involved in each project, to attend user-testing workshops. Over the last 15 years, we have worked with a great number of groups across civil society including the media, medical and environmental charities, patient groups, other clinicians and researchers. Our network is unique,
diverse and ever-expanding and is a great resource to draw from to make sure the views of those that need, use and rely on the information in question, are represented. With our most recent
project, we held 8 user-testing workshops in two streams: one with parents and families of children who have had or will have heart surgery, and one with people who might use the site professionally such as policy officers for medical charities, press officers at royal colleges, academic press and health professionals.
Secondly, our role involves acting as neutral facilitators in the user-testing process. In each workshop, we probe participants for feedback on all aspects of the information being presented - including content, language, accessibility and appearance. Their feedback drives the evolution of content, and the updated iteration is then reviewed at the next stage of user-testing. This process allows participants to directly shape the resource into a format that is accessible and useful to the very audiences that will be using it. Our neutrality is particularly important. While with most projects we invite some of the researchers to observe the workshops, they are present only in a passive capacity and to answer technical questions that participants may have. This allows participants to more freely ask questions and scrutinize the information, and enables us to capture all queries, different interpretations and suggestions without influence from the researchers.
The researchers’ response
Many of the researchers we’ve partnered with have found listening to the public a transformative experience and have been inspired to involve them more in their future work.
Dr Rebecca Ghosh and Dr Anna Hansell, SAHSU following the launch of the Environment & Health Atlas:
"It became clear from the very first workshop that what we as academics thought was an
accessible publication had been written in a very formal academic style!”
Erik Ingelsson, University of Uppsala, on working with Sense About Science on the UbbLE website:
“We would like to recommend other researchers to consider this before new health-related tools
are introduced to the public. It’s exciting that people are so interested and engaged.”
Professor David Spiegelhalter, University of Cambridge, after our most recent project, Understanding Children’s Heart Surgery outcome:
"This has been a humbling and invaluable experience. I thought I knew something about communicating statistics,
but sitting listening to enthusiastic users struggling to understand concepts made
me realise my inadequacy. If we want to genuinely communicate statistical
evidence, I am now utterly convinced that users have to be involved from the
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: Contact Emily Jesper: firstname.lastname@example.org.
Joanne Thomas is Projects and Events Coordinator at Sense About Science.
Image Credit: Alexander Rathers/Shutterstock