Patient Perspectives on Research Findings
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Patient Perspectives on Research Findings



Sara Ellis presents Patients Perspectives on Research Findings at the Patients Participate !Workshop at the British Library, 17th June 2011

Sara Ellis presents Patients Perspectives on Research Findings at the Patients Participate !Workshop at the British Library, 17th June 2011



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    Patient Perspectives on Research Findings Patient Perspectives on Research Findings Presentation Transcript

    • Dr Sara Ellis communications managerPatient perspectives on research findings
    • AMRC• Association of Medical Research Charities established 1987• We now represent 126 member charities from heart disease, diabetes and cancer to dementia, cystic fibrosis and motor neurone disease• Who we are Our members are our trustees, a team of eight people – covering research, peer review, evaluation, policy, public affairs, communications, finance, public involvement and engagement• What we do Support our members to enable them to be effective research funders
    • Our membersMedical research charities today• AMRC members funded over £1 billion medical and health research in 2010-11 • Our association represents ~94% of all available charity funding
    • Communication matters• Its our mission public benefit – research is what our members do• Communication is a key ingredient in our relationship with the public• Supporters, patients, families – support us because we tell them about the research we fund online, social media, annual reviews, newsletters, campaigning, media• Most charities that fund research would like better lay summaries many employ people to write them• Ipsos MORI public attitudes to science 2011 Public appetite for more – 4 in 10 hear about enough science, and 5 in 10 want more
    • It’s our natural ground• Why do charities care about patient and public involvement in research? link between patients and scientists• Explore how charities involve patients and the public at all stages of their research cycle setting research strategies – involvement in funding decisions – communication and dissemination• Led by our members a learning set of 10 charities – experienced champions to sceptical beginners – shared experiences• What we learned its difficult, cultural change, were all different, meaningful not tokenistic
    • How to get good lay summariesThe Stroke Association• Lay members on research awards committees• Problem: lay summary application forms inaccurately reflecting the project• Solution: grant applicants now complete a plain English summary form alongside a traditional application form• Structured questions
    • Involving patients in communicationMuscular Dystrophy Campaign Its very important that the charity Talk Research works with supporters like me, looking• Written by staff – challenging to at current research, putting it in lay pitch at right level and identify terms and getting it out … to families what mattered most to families who want to learn more• Talk Research – a research communication focus group open to anyone with an interest in research• Charity now writes for and with the people who are affected by muscle disease
    • ….getting your perspectives Thank you