1. Trusted evidence. Informed decisions. Better health. Consumers for the Terrified Exploring new ways of involving consumers in the work of Cochrane

2. Presenters Richard Morley Cochrane Consumer Coordinator Sally Crowe CCNet and Prioritisation Methods Group member Caroline Struthers Consumer Network Executive Trusted evidence. Informed decisions. Better health.

3. Welcome Iain Chalmers & Paul Glasziou – 85% research “wasted” http://researchwaste.net/ http://researchwaste.net/ Patient/consumer involvement is a key way to avoid waste We will cover Consumer involvement in Cochrane - setting the scene (RM) Examples of innovative consumer involvement i.Outcomes important for patients, public and practitioners (SC) ii.Building online consumer communities (CS) iii.New initiatives (RM) We will ask you Are we terrified of consumers? What can we do to involve them throughout the whole production of review production?

4. The current key aims of the Consumer Network 1.To support Cochrane groups in the inclusion of consumers 2.To support consumers’ participation in Cochrane 3.To increase consumer membership in low income countries and non-English speaking countries 4.To increase awareness of Cochrane reviews among consumers worldwide 5.To develop and disseminate information for consumers Trusted evidence. Informed decisions. Better health. The current Consumer Network Executive

5. Trusted evidence. Informed decisions. Better health. Cochrane Consumer Structure and Function Review 1.Survey of Cochrane’s Review Groups and the 1338 members of the Cochrane Consumer Network 2.Analysis of the information held by Cochrane about its consumer volunteers 3.Literature review of papers about consumer involvement in Cochrane and in systematic reviews generally 4.Survey of the views of external partners

6. Trusted evidence. Informed decisions. Better health. Membership analysis 1338 registered consumers, mostly from English-speaking and developed world 300 – 500 recently contributed but uncertainty about the level of consumer involvement in Cochrane

7. Trusted evidence. Informed decisions. Better health. Review Group Survey: Summary of findings Review Groups overwhelmingly value the involvement of consumers and there are examples of good practice in involvement to be found throughout the network though practice is inconsistent Review Groups would value support with targeted recruitment and training in involvement There needs to be an effort better to engage with Review Groups in order to facilitate improved involvement across a range of issues including recruitment, training, communication, resources and innovation in involvement “ The involvement of consumers is essential in ensuring our reviews – and plain language summaries in particular – are accessible to the lay reader.” “ Consumers help to inform decisions made around identification and prioritization of patient - important topics and outcomes.” “ Involving and engaging Consumers takes valuable time away from editorial tasks. We need to find a way to involve Consumers more fully in our activities.”

8. Trusted evidence. Informed decisions. Better health. “ I really enjoy being part of Cochrane and doing reviews and protocols etc. It ' s challenging and I really feel that I ' m making a difference in patient outcomes. It also helps me to stay on top of evidence based research !” “ I am deeply committed to Cochrane, but feel quite disconnected at the moment… I am not sure how to get back involved and to ensure I am up to date etc.” “ I have enjoyed the little I have done so far for Cochrane but it would be good to feel less isolated as a member of CCNet.” “ I feel underutilized.” Consumer Survey: summary of findings Consumer Network members are a disparate group, with complex and multiple ways of identifying themselves in their interactions with Cochrane. Motivated and united by an interest in evidence-based medicine and a desire to contribute to the production and dissemination of Cochrane evidence. Contributions are largely commenting on reviews and plain language summaries Unmet demand to do more, including contributing to the whole research cycle, attending meetings and the training to achieve this. Communication with consumers could be improved

9. Trusted evidence. Informed decisions. Better health. Delivery Plan to 2020: Priorities 1.Develop a “statement of principles” on consumer involvement in Cochrane 2.Integrate consumer involvement and representation in decision-making groups at all levels in Cochrane 3.Support consumer involvement throughout the entire review production and evidence dissemination process 4.Liaise with the Cochrane Membership development team to ensure the scheme offers consumer members significant benefits 5.Build on and develop new programmes of support for Cochrane consumers 6.Improve communication about the benefits of consumer involvement 7.Build effective external partnerships 8.Increase awareness and use of Cochrane evidence among consumers worldwide

10. Questions or comments? E.g. Do you think this analysis is in line with your experience?

11. Outcomes important for Patients, Public and Practitioners Sally Crowe Project funded by UK Cochrane

12. “Not all that is measurable is of value, and not all that is of value can be measured” Bradley and Field 1995 Evidence Based Medicine, Lancet 346:8338-839

13. Face to face workshop Asthma Airways Group May 2014 – October 2014 Partners: Asthma UK, (Patient and Professional members) Online survey Sinusitis Ear Nose Throat Group October 2014 – March 2015 Partners: ENT UK, Professional organisations, no patient group for sinusitis Experiential data from online collection Breastfeeding Pregnancy and Childbirth Group July 2014 – January 2015 Partners: Healthtalk, Health Experiences Research Group Oxford University, National Childbirth Trust, Breastfeeding Network Outcomes Important to Patients, Public and Practitioners

14. What were the important outcomes from each pilot? Correlate to existing outcomes used by the review group? What has the engagement activity delivered for the review group? Practical considerations; costs, skills and support needed, if we did it again...... Evaluation

15. Face Book survey then Face to face workshop 18 people participated 69 outcomes described Important outcomes symptoms, quality of life, flare ups, adherence. Some overlap with outcomes used in Asthma systematic reviews. Online survey 235 people participated, 155 practitioners, 80 people with sinusitis 549 ‘in scope’ outcomes generated 73% of these concerned symptoms (sino nasal and general), expressed by both patients and professionals Secondary analysis of breastfeeding Healthtalk data 51 interview transcripts, independently assessed x 2 researchers Generated 15 outcome themes More diverse than outcomes used in breastfeeding reviews, some correlation Unable to ID important outcomes Key results

16. Plain Language Summary of the ENT Disorders Group Pilot http://ent.cochrane.org/chronic-rhinosinusities- prioritising-outcomes http://ent.cochrane.org/chronic-rhinosinusities- prioritising-outcomes Identifying the most important outcomes for systematic reviews of interventions for rhinosinusitis in adults: working with Patients, Public and Practitioners. Identifying the most important outcomes for systematic reviews of interventions for rhinosinusitis in adults: working with Patients, Public and Practitioners. Hopkins C, Philpott C, Crowe S, Regan S, Degun A, Papachristou I, Schilder AG. Rhinology. 2015 Nov 15. [Epub ahead of print] PMID: 26569006 Key results handout to be shared with webinar participants Further information

17. Questions or comments? E.g. Do you think Cochrane involves consumers enough in outcomes development?

18. Building online consumer communities Caroline Struthers

19. The ALOIS Community

20. The ALOIS task

21. Recruiting volunteers

22. Interactive modules

23. Module content  History and purpose of Cochrane  Why systematic reviews are important  Key terminology used in research and reviews  Randomised trial methods  What’s special about randomisation  Control groups and blinding  Different trial designs and phases  The effect of publication bias  The purpose of meta-analysis  Forest plots  The purpose of specialized study registers, such as ALOIS  The concept of statistical power in clinical trial design

24. Consumer pathway

25. Cochrane Crowd

26. From training to screening

27. Task Exchange

28. Questions or comments? E.g. Do you think consumers would be interested in contributing to Cochrane via an online community?

29. New initiatives Richard Morley

30. Consumer Training Working with Cochrane Training team Collaboratively developing a learning and skills framework Re-formatting existing resources, signposting to external resources, building new resources

31. Project ACTIVE The ACTIVE project: Authors and Consumers Togther Impacting on eVidencE (Alex Pollock et al) Synthesise relevant evidence, information resources, and examples of active involvement in SR Develop online learning relating to consumer involvement in Cochrane reviews

32. Thank you!

33. Consumer Network website http://consumers.cochrane.org/ Twitter @CochraneConsumr Facebook https://www.facebook.com/groups/188375461224285/ Consumer Training website http://training.cochrane.org/consumers Richard Morley, Consumer Coordinator rmorley@cochrane.org Trusted evidence. Informed decisions. Better health.

34. Questions? Discussion? Are you terrified of consumers? If so, why?