The Crowd-Sourced Lay Summary for
Medical Research
Monica Duke
m.duke@ukoln.ac.uk
Patients Participate! Project Manager
6th UCL Bloomsbury Conference, 28-29 June 2012
UKOLN is supported by:
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Patients Participate!
#JISCPP
http://blogs.ukoln.ac.uk/patientsparticipate/
Crowd-sourcing Lay Summaries:
Bridging the Gap in Health Research
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Overview
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About Citizen Science
Aims of the project
The Lay Summary
Project activities and outputs
Conclusions
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David Willetts
“I also remember browsing through the
pages of the leading journals to see which
articles were well-thumbed. It helped me
to spot the key ones I ought to be familiar
with – a primitive version of crowdsourcing. The web should make that kind
of search behaviour far easier.”
Speech to Publishers Association annual general meeting, London 2 May 2012
http://www.bis.gov.uk/news/speeches/david-willetts-public-access-to-research
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Citizens getting
involved in
science
5
Classify
galaxies…
6
7
Patient
communities
– Organized by
disease
– Patient experience
foremost
– Collaboration to
conduct studies
Brownstein, C. A., Brownstein, J. S., Williams, D. S., Wicks, P., and Heywood, J. A. (2009).
‘The power of social networking in medicine’,
Nature Biotechnology, vol.27, no.10, pp.888-890. Nature Publishing Group. doi:
10.1038/nbt1009-888
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Validate
results data
and publish
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Potential Benefits
• Empowerment
– Active participants and stakeholders
• Improved Understanding
• Social Contact
• Inclusivity
– Levels the playing field
• Skill Development
– Training, new knowledge, communication skills,
technology
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Leisure pastimes…..
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Aristotle
Hevelius (1611-1687) lunar topology
Goethe (botany, colour, anatomy)
Gerald Durrell
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Creating content
Project aims
Can we use crowd-sourcing to produce
lay summaries?
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Lay Summary Definition
“A lay summary is a brief summary of a
research project or a research proposal
that has been written for members of the
public, rather than researchers or
professionals. It should be written in plain
English, avoid the use of jargon and
explain any technical terms that have to be
included.”
INVOLVE quoted in Smith and Ashmore (2010)
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How Lay summaries are used
• Funders require them
• Making research funding decisions –
alongside scientific experts
• Developing a research strategy for
the charity – responsive to patient
needs
Association of Medical Research Charities. Natural Ground: Paths to patient and public
involvement for medical research charities. AMRC, October 2009.
http://www.amrc.org.uk/our-members_natural-ground:-patient-and-public-involvementproject_ppi:-natural-ground
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Improving research
“our patient reviewer was the only
person to spot that a researcher had
assumed that people would only have
one artificial joint – many people with
arthritis have more than one
replacement joint, and so the
suggested blood test would provide
unclear results” Arthritis Research UK
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Improving impact
“The service user who has been
involved in research is often its most
powerful advocate, promoting
understanding among other service
users and acting as ambassadors for
the charity whether it be to the
politician or the major donor.”
Simon Denegri (Chair of INVOLVE)
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Lay Summary Challenges
• Who should write them?
• What makes a good lay summary?
– Audience
– Reading aloud?
• Takes skill
• Purpose
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What people ask about…
Help me get to grips with
it
•Should we worry?
•Can I get something from
scientists?
•Is it a scare story?
•Is it science?
•Who says it’s safe?
Balance of scientific
opinion
• Is it majority opinion?
• How are scientists
split?
Legitimacy
• Is it a proper study?
How much do we know? • How can I tell?
•What do scientists actually • Have they talked to
know?
scientists?
•What tests have been
• What kind of study is
done? www.senseaboutscience.
it?
•How sure are they? org
@voiceofyoungsci @senseaboutsci
voiceofyoungscience
AMRC members review
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Project activities
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Feasibility study
7 months (Mar – Oct 2011)
Workshop near start
Case Studies
Guides
Various stakeholders
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Workshop: what is needed
• Shared learning across organisations
– Guidelines, methods, visibility
• Online mechanisms for delivery
• Resource implications and
sustainability
http://blogs.ukoln.ac.uk/patientsparticipate/files/2011/10/PP-Workshop-Report-final.pdf
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6 Case Studies
http://www.bl.uk/reshelp/experthelp/science/eventsandprojects/
Patients-Participate_Case-Studies.pdf
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Case Study highlights
CancerHelp UK employs a dedicated team of specialist
nurse writers, with defined skills and training in
writing for lay audiences.
Muscular Dystrophy Campaign The patients who
participate in ‘Talk Research’ find the process very
rewarding and often become involved in other
activities.
Asthma UK scientists on the research review panels
say they find the lay summaries very useful,
especially when reviewing proposals outside their
own area of expertise.
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Case Study highlights
PLoS Medicine includes a lay summary embedded
within every research article they publish, written
by the journal’s staff and freelance editors.
EuroStemcell The editorial process ensures that all
content on the website has an expert stamp of
approval.
Cancer Research UK wikipedia project has to consider the
impact of its engagement with Wikipedia, the level of
resource that should be devoted to this initiative and how to
integrate it with existing activities.
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Community feedback:
http://a.nnotate.com/php/pdfnotate.php?d=2012-06-15&c=ZoceUtdX
Briefing
paper
Community feedback:
http://a.nnotate.com/php/pdfnotate.php?d=2012-06-15&c=qDpNgbed
Other outputs
• Citizen science scenarios
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http://blogs.ukoln.ac.uk/patientsparticipate/2011/08/08/scenarios-for-writing-laysummaries/
• Talk Science event
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http://www.bl.uk/reshelp/experthelp/science/talkscience/previousevents/TalkScien
ce14/index.html
http://blogs.ukoln.ac.uk/patientsparticipate/files/2011/09/WebPatientsParticipateSu
mmaryReport.pdf
• Patient Guide
– http://www.amrc.org.uk/our-members_patients-participate
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Project conclusions
• Islands of activity need connecting
– Charities, publishers, academics, patients,
service provides, funders
• Evidence base required
– What makes a good lay summary?
– Who can write a (good) lay summary?
• Service provision questions
– Discovery
– Trust and reputation
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David Willetts
“the Councils are now investing £2 million
in the development of a UK "Gateway to
Research" portal …It will provide direct
links to actual research outputs such as
data sets and publications …ensure
information is presented in a readily
reusable form, using common formats
and open standards .”
Speech to Publishers Association annual general meeting, London 2 May 2012
http://www.bis.gov.uk/news/speeches/david-willetts-public-access-to-research
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Further information
Web: blogs.ukoln.ac.uk/patientsparticipate
Email: m.duke@ukoln.ac.uk
Project Team
UKOLN
Monica Duke, Liz Lyon, Emma Tonkin
British Library Lee-Ann Coleman, Karen Walshe,
Allan Sudlow
AMRC
Simon Denegri, Sara Ellis, Kay Julier
University of Bath Melanie Welham, Paul de Bank
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