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A centre of expertise in digital information management
www.ukoln.ac.uk
UKOLN is supported by:
The Crowd-Sourced Lay Summary for Medical Research
Monica Duke [email protected]
Patients Participate! Project Manager6th UCL Bloomsbury Conference, 28-29 June 2012
A centre of expertise in digital information management
www.ukoln.ac.uk
Crowd-sourcing Lay Summaries:
Bridging the Gap in Health Research
Patients Participate!
#JISCPPhttp://blogs.ukoln.ac.uk/patientsparticipate/
A centre of expertise in digital information management
www.ukoln.ac.uk
Overview
• About Citizen Science
• Aims of the project
• The Lay Summary
• Project activities and outputs
• Conclusions
A centre of expertise in digital information management
www.ukoln.ac.uk
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 crowd-sourcing. 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
5
Citizens getting involved in science
6
Classify galaxies…
7
A centre of expertise in digital information management
www.ukoln.ac.uk
Patientcommunities
– 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
A centre of expertise in digital information management
www.ukoln.ac.uk
Validate results data and publish
A centre of expertise in digital information management
www.ukoln.ac.uk
Potential Benefits• Empowerment
– Active participants and stakeholders
• Improved Understanding• Social Contact• Inclusivity
– Levels the playing field
• Skill Development– Training, new knowledge, communication skills,
technology
A centre of expertise in digital information management
www.ukoln.ac.uk
Leisure pastimes…..
• Aristotle
• Hevelius (1611-1687) lunar topology
• Goethe (botany, colour, anatomy)
• Gerald Durrell
Creating content
A centre of expertise in digital information management
www.ukoln.ac.uk
Project aims
Can we use crowd-sourcing to produce lay summaries?
A centre of expertise in digital information management
www.ukoln.ac.uk
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)
A centre of expertise in digital information management
www.ukoln.ac.uk
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-involvement-project_ppi:-natural-ground
A centre of expertise in digital information management
www.ukoln.ac.uk
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
A centre of expertise in digital information management
www.ukoln.ac.uk
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)
A centre of expertise in digital information management
www.ukoln.ac.uk
Lay Summary Challenges
• Who should write them?
• What makes a good lay summary?– Audience– Reading aloud?
• Takes skill
• Purpose
@voiceofyoungsci @senseaboutsci voiceofyoungscience
www.senseaboutscience.org
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?
How much do we know?•What do scientists actually
know?•What tests have been done?
•How sure are they?
Balance of scientific opinion
• Is it majority opinion?• How are scientists split?
Legitimacy• Is it a proper study?• How can I tell?• Have they talked to
scientists? • What kind of study is it?
A centre of expertise in digital information management
www.ukoln.ac.uk
AMRC members review
A centre of expertise in digital information management
www.ukoln.ac.uk
Project activities
• Feasibility study
• 7 months (Mar – Oct 2011)
• Workshop near start
• Case Studies
• Guides
• Various stakeholders
A centre of expertise in digital information management
www.ukoln.ac.uk
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
A centre of expertise in digital information management
www.ukoln.ac.uk
6 Case Studies
http://www.bl.uk/reshelp/experthelp/science/eventsandprojects/Patients-Participate_Case-Studies.pdf
A centre of expertise in digital information management
www.ukoln.ac.uk
Case Study highlightsCancerHelp 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.
A centre of expertise in digital information management
www.ukoln.ac.uk
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.
Community feedback:
http://a.nnotate.com/php/pdfnotate.php?d=2012-06-15&c=ZoceUtdX
Community feedback:http://a.nnotate.com/php/pdfnotate.php?d=2012-06-15&c=qDpNgbed
Briefing paper
A centre of expertise in digital information management
www.ukoln.ac.uk
Other outputs
• Citizen science scenarios– http://blogs.ukoln.ac.uk/patientsparticipate/2011/08/08/scenarios-for-writing-lay-s
ummaries/
• Talk Science event– http://www.bl.uk/reshelp/experthelp/science/talkscience/previousevents/TalkScien
ce14/index.html
– http://blogs.ukoln.ac.uk/patientsparticipate/files/2011/09/WebPatientsParticipateSummaryReport.pdf
• Patient Guide– http://www.amrc.org.uk/our-members_patients-participate
A centre of expertise in digital information management
www.ukoln.ac.uk
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
A centre of expertise in digital information management
www.ukoln.ac.uk
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 2012http://www.bis.gov.uk/news/speeches/david-willetts-public-access-to-research
A centre of expertise in digital information management
www.ukoln.ac.uk
Further informationWeb: blogs.ukoln.ac.uk/patientsparticipateEmail: [email protected]
Project TeamUKOLN Monica Duke, Liz Lyon, Emma TonkinBritish Library Lee-Ann Coleman, Karen Walshe,
Allan SudlowAMRC Simon Denegri, Sara Ellis, Kay JulierUniversity of Bath Melanie Welham, Paul de Bank
