Lay writing of medical research in charities CharityLay summaries of research provided to members Who writes lay summaries Guidance provided Grant applications Own charity- funded published research Other published research Open clinical trials ResearcherCharity staff(Specific document; questions or headings on application form; verbal) Alzheimer’s Society Ataxia UK Fight for Sight Prostate Action Diabetes UK CORE Prostate Cancer Charity

CharityLay summaries of research provided to members Who writes lay summaries Guidance provided Grant applications Own charity- funded published research Other published research Open clinical trials ResearcherCharity staff(Specific document; questions or headings on application form; verbal) CGD Research Trust Parkinson’s UK Meningitis Research Foundation Alzheimer’s Research UK * National Osteoporosis Society WellChild Bupa Foundation **

CharityLay summaries of research provided to members Who writes lay summaries Guidance provided Grant applications Own charity- funded published research Other published research Open clinical trials ResearcherCharity staff(Specific document; questions or headings on application form; verbal) Kids Kidney Research + Epilepsy Research UK Southwest Thames Kidney Fund Breast Cancer Campaign Pharmacy Research Trust INSPIRE Breakthrough Breast Cancer * British Liver Trust *

CharityLay summaries of research provided to members Who writes lay summaries Guidance provided Grant applications Own charity- funded published research Other published research Open clinical trials ResearcherCharity staff(Specific document; questions or headings on application form; verbal) Tenovus British Lung Foundation The Migraine Trust Arthritis Research UK

Yes Some No *Provide link to existing external databases. No additional lay information provided by charity **Run seminars on published research and invite patient groups where relevant + Piloting involvement of teenage Duke of Edinburgh participants to make lay videos about research for YouTube

Summary of themes Of 25 charities contacted, 21 have staff writing research information in lay terms Charities write about what they are funding much more than research that has resulted in a published academic paper Many charities find it difficult to get timely information on published research they have funded While all charities ask researchers to summarise applications for funding and end of project reports in lay terms, (x out of y) rewrite the summaries or find them difficult to use for the intended purpose Charities feel researchers need to be better trained in communicating with a lay audience Charities would value a mechanism where they could get feedback from a lay audience on the quality and level of writing they are doing about research

Recommendations Make lay writing guidelines for researchers available to AMRC members Publish overview of what members are doing in terms of lay writing to encourage sharing of best practice – consider running a workshop if sufficient interest Continue partnering with other organisations to explore mechanisms for getting lay summaries for all papers on UKPubMed central Continue partnering with other organisations to explore mechanisms for getting feedback on lay research information from appropriate audiences