Patients Participate!

This was a workshop held today with a view to bringing together people from a wide range of communities (patients, researchers, interested charities) to look at the motivations, challenges and barriers to people accessing biomedical information. It was a day of thought provoking work as we thought through how these challenges can be met. Although I was there as a result of my personal involvement with Independent Cancer Patients' Voice, I also had plenty to think about - and say! - in my work capacity.

The day was introduced by Liz Lyon of the University of Bath. She set the tone in her opening remarks, commenting on the fact that citizens are getting involved in a wide range of projects across a variety of branches of science. She went on to say that sometimes when research is published lay understanding can be lost in the technical language.

Lee-Ann Coleman of the British Library (who hosted the day at their Conference Centre) discussed Open Access and posed the question "does access make it accessible?".  Sara Ellis of the Association of Medical Research Charities reminded us that involving patients at all stages is not always easy and may require organisational cultural change. She also made the extremely important point that involvement must be meaningful and not just tokenistic. This last point chimed with the experience I have had over the last c15 years working in the disability sector.

Melanie Welham from the University of Bath concluded the first part of the Workshop with a consideration of the barriers faced by both patient and academic communities and made the point that better communication leads to wider participation.

After that we moved to smaller working groups to think through the needs of the various groups who access biomedical information, including a discussion on why and how they accessed it. This took some time and was discussed in considerable detail. At the end of the time each workshop came up with a set of key recommendations. These included things like the need to produce clear lay summaries that include things such as any uncertainty in the information and the context within which the research had been done, lay involvement, information formats and open access to information in various layers of detail. Thought was given as to how this could be achieved with further recommendations such as a set of guidelines for producing the lay summaries.

After the recommendations from each group had been fed back there were final presentations from Graham Steel, who is a patient advocate, and from Simon Denegri, chair of Involve. Graham Steel emphasised the use of modern technologies, while Simon Denegri mentioned the new contract the research comminity has with society and the fact that lay summaries can bring the science alive.

The project is ongoing and will continue its work aiming to bridge the gap in access to and understanding of biomedical and health information and research. It is clearly a worthwhile project which should open up the availability of scientific research to a wider community.