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Patient Perspectives on Research Findings
1. Dr Sara Ellis
communications manager
Patient perspectives on research findings
2. 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
3. Our members
Medical 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
4. Communication matters
• It's 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
5. 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
it's difficult, cultural change, we're all different,
meaningful not tokenistic
6. How to get good lay summaries
The 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
7. Involving patients in communication
Muscular Dystrophy Campaign 'It's 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