UKOLN is supported by:

1. 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:

2. Patients Participate! #JISCPP http://blogs.ukoln.ac.uk/patientsparticipate/ Crowd-sourcing Lay Summaries: Bridging the Gap in Health Research

3. Overview • About Citizen Science • Aims of the project • The Lay Summary • Project activities and outputs • Conclusions

4. 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 5

6. Classify galaxies… 6

7. 7

8. 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

9. Validate results data and publish

10. Potential Benefits • Empowerment • Active participants and stakeholders • Improved Understanding • Social Contact • Inclusivity • Levels the playing field • Skill Development • Training, new knowledge, communication skills, technology

11. Leisure pastimes….. • Aristotle • Hevelius (1611-1687) lunar topology • Goethe (botany, colour, anatomy) • Gerald Durrell

12. Creating content

13. Project aims Can we use crowd-sourcing to produce lay summaries?

14. 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)

15. 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

16. 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

17. 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)

18. Lay Summary Challenges • Who should write them? • What makes a good lay summary? • Audience • Reading aloud? • Takes skill • Purpose

19. 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? www.senseaboutscience.org @voiceofyoungsci @senseaboutsci voiceofyoungscience

20. AMRC members review

21. Project activities • Feasibility study • 7 months (Mar – Oct 2011) • Workshop near start • Case Studies • Guides • Various stakeholders

22. 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

23. 6 Case Studies http://www.bl.uk/reshelp/experthelp/science/eventsandprojects/Patients-Participate_Case-Studies.pdf

24. Case Study highlights CancerHelp UKemploys a dedicated team of specialist nurse writers, with defined skills and training in writing for lay audiences. Muscular Dystrophy CampaignThe patients who participate in ‘Talk Research’ find the process very rewarding and often become involved in other activities. Asthma UKscientists on the research review panels say they find the lay summaries very useful, especially when reviewing proposals outside their own area of expertise.

25. Case Study highlights PLoS Medicineincludes a lay summary embedded within every research article they publish, written by the journal’s staff and freelance editors. EuroStemcellThe editorial process ensures that all content on the website has an expert stamp of approval. Cancer Research UKwikipedia 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.

26. Community feedback:http://a.nnotate.com/php/pdfnotate.php?d=2012-06-15&c=ZoceUtdX

27. Briefing paper Community feedback: http://a.nnotate.com/php/pdfnotate.php?d=2012-06-15&c=qDpNgbed

28. Other outputs • Citizen science scenarios • http://blogs.ukoln.ac.uk/patientsparticipate/2011/08/08/scenarios-for-writing-lay-summaries/ • Talk Science event • http://www.bl.uk/reshelp/experthelp/science/talkscience/previousevents/TalkScience14/index.html • http://blogs.ukoln.ac.uk/patientsparticipate/files/2011/09/WebPatientsParticipateSummaryReport.pdf • Patient Guide • http://www.amrc.org.uk/our-members_patients-participate

29. 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

30. 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

31. Further information Project Team Web: blogs.ukoln.ac.uk/patientsparticipate Email: m.duke@ukoln.ac.uk 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