Involving patients and the public in talking about medical research
By Sara Ellis
Information about health and medical research may be more readily available than ever before, but this does not always help patients or the public make sense of scientific research.
In ‘Patients Participate!’ – a collaborative project between the British Library, UKOLN (formerly known as the United Kingdom Office for Library and Information Networking) at the University of Bath, and the Association of Medical Research Charities (AMRC) – we wanted to find out about the potential for involving the public and researchers in making sense of scientific literature. We set out to look for ways to bridge the gap between access to health research information and actually understanding that information.
Thanks to initiatives such as UK PubMed Central (UKPMC), anyone with a computer and an internet connection can read the latest biomedical research findings. But access is not the same as understanding, as medical research charities and other patient groups are aware. Charities play a particularly significant part in funding medical and health research in the UK. Last year UK charities invested over £1billion in health research – about a third of all public spending on medical research. Their supporters want to know more about the difference their money makes and many charities employ people to write about research in lay-friendly terms.
‘Patients Participate!’ kicked off with a consultation workshop, involving patients, academics, charities and other funders. We wanted to explore views on engaging patients and the public in writing lay summaries of www.invo.org.uk 11 biomedical research papers, using citizen science-like models (when members of the public, who may not have scientific training, conduct scientific research, for example Galaxy Zoo) and crowd sourcing (when tasks are outsourced to a large community of people, usually via the internet, for example Wikipedia). We were encouraged by the consensus that emerged at the workshop, with overwhelming backing for the idea that every UKPMC article should have a lay summary.
There was strong endorsement for guidelines and templates to make it easier for writers, and mechanisms for gathering feedback from the intended audiences. But when it came to who should write these summaries, the preference was for researchers or other professionals, rather than patients themselves, and a clear recommendation that researchers need support to write well for lay audiences.
AMRC brought our experience from an earlier project, ‘Natural Ground’, where we examined how our member charities involve patients and the public in research. So we were keen to go back to our members and find out how patient and public involvement in medical research had evolved.
We found a good deal of enthusiasm for the aims of ‘Patients Participate!’, and over the course of the project we spoke to around 40 charities about how they communicate about medical research with patients, supporters and other interested parties. They told us their priorities were:
- to be able to find out about and access publications that result from the research they fund – many find it difficult to get timely information on published research
- better lay summaries – many employ people to write about research in lay terms
- a way to get feedback on the information they provide for lay audiences – is it useful, interesting and pitched at the right level?
- better training for researchers in communicating with lay audiences.
Almost all charities ask researchers to summarise their research in lay terms when applying for funding and at the end of their projects. Yet one in three told us they have difficulties using the summaries for their intended purposes, and often have to rewrite them.
With so much expertise and good practice in writing for lay audiences amongst charities, one key output of the project was to share and signpost to existing resources. Several charities, funders and publishers gave up their time to take part in in-depth interviews, which were written up as case studies. And our charities generously shared their guidelines and style guides, which we used to compile guidance for researchers on writing for lay audiences.
Our lasting learning from ‘Patients Participate!’ is that research findings must be accessible if patient involvement is to continue to grow. In March 2012, AMRC brought together people from across medical research charities who work on research communications, patient and public involvement and engagement to share creative ideas for talking about research.
For more about the resources mentioned in this article please visit: www.amrc.org.uk/ our-members_patients-participate
Contact: Sara Ellis, Communications Manager at the Association of Medical Research Charities
Tel: 0207 685 2624