1. Involving Consumers in Systematic Reviews Catherine McIlwain cmcilwain@cochrane.org The Cochrane Collaboration Consumer Co-ordinator

2. Today’s Goals: 1.Requests for consumer referees 2.Planning for consumer involvement 3.Identifying consumers 4.Repeat consumer participation 5.Training Resources 6.Measurable consumer participation

3. Consumers & Cochrane Reviews CCNet was formed in 1993 to support consumer interests within The Cochrane Collaboration.

4. Different Cultures Clinical research studies are often designed by clinicians and researchers who may feel that they understand patients’ needs and concerns.

5. CCNet for Cochrane CCNet works with Consumers to advance Cochrane’s ability to improve review information by answering the questions that are important to consumers.

6. Impact of Consumer Input One of the main benefits of consumer participation consistently reported is the increased relevance of the research for consumers (Boote et al 2002).

7. Discussion….. 35 CRGs currently involve consumers in their reviews, but many more have reported a desire to do so (Hanley 2009) What prevents consumer participation in the review process? What does Cochrane do well to involve consumers?

8. Section 1: Requests for Consumer Referees “Despite many requests over the years very few reviews looking for consumer members or peer reviewers give any sort of plain language description of what the condition is actually about! Even for someone like me who has some medical terminology the titles are often completely incomprehensible so one assumes the review will be even more so!” – Cochrane Consumer Referee

9. TOP TIPS: Include a user-friendly title Include a plain language description about the condition Include a plain language summary of the review

10. Plain Language Titles “These are submitted to you with plain language titles in bold. (The title registered in the Cochrane Library appears in italics below.) …. Infection prevention using antibiotics during chest tube insertion (protocol) (Registered title: Prophylactic antibiotics for intercostal drain insertion) “ (a referee request by the Injuries Group)

11. Description of the Condition Positive airway pressure for patients with heart failure and sleep disordered breathing “Patients with heart failure have sleep disordered breathing more often than the general population. In a person with sleep disordered breathing, air movement is periodically diminished or stopped. There are two types of sleep apnoea: obstructive and central sleep apnoea. …” (a referee request by the Heart Group)

12. Plain Language Summaries When consumers repeatedly suggest terms to avoid in a PLS, consider creating a ‘jargon busting’ list for new review authors to reference

13. Who Are Consumers? All users or receivers of health care, patients, caregivers, family and members of the public.

14. Section 2: Planning for Consumer Involvement What are your goals? The type of consumer input will determine the method for participation. What are the goals and interests of consumers? Involving consumers in how they participate in your CRG is likely to yield more fruitful results. What kind of resources do you have? This will dictate whether involvement can be long term and time intensive or short term with discrete goals to accomplish.

15. Consumer Insights = Better Research A systematic review identified six trials of consumer participation in health research (Nielson et al 2006), all of which were at moderate to high risk of bias. These trials provide some evidence that consumer involvement in patient information material results in information that is more relevant, readable and understandable to patients.

16. Why Consumers Take Part Wanting to contribute to the accessibility and dissemination of healthcare information Hoping to find a relevant evidence for their own condition or clinical consultations Access to specialists Meeting other consumers in the same situation

17. Feelings of Isolation “One of the big problems for Cochrane consumers is the isolation, not having anyone to discuss things with and frequently never having even met the other team members. Being able to have a verbal discussion is so much more meaningful than email - I hope the use of Skype really takes off in the Collaboration.” – Cochrane Consumer Referee

18. TOP TIPS: Group consumers to work together Consider including consumers via Skype Accept a wide range of commenting options

19. Working with Consumers There is evidence that consumers have different research priorities (Stewart, R., et al., Clinicians’ and patients’ research priorities: a scoping review, in 17th Cochrane Colloquim. 2009: Singapore + Tallon).

20. Priority Setting James Lind Alliance has developed a programme to involve consumers in setting research priorities.

21. Models of Consumer Participation Case Study One: Online long-term consumer involvement facilitated by a paid consumer facilitator The Cochrane Eyes and Vision Group (CEVG) has three on-line consumer panels managed by their consumer co-ordinator.

22. Models of Consumer Participation Case Study Two: Consumers acting as consumer referees, recruited through CCNet. Consumers are not in direct communication with the review authors; rather, all communication is via the editorial base, usually by email.

23. Let’s Discuss….. Where can consumers make the most difference within Cochrane? Are there other ways for consumers to get involved? What are other consumer roles?

24. Section 3: Identifying Consumers CCNet mailing list consumers@lists.cochrane.org consumers@lists.cochrane.org Archie Searching notes Cochrane publicity sources Cochrane news feeds and CCInfo

25. How to Recruit Consumers CCNet newsletter feature notice Copy/paste your notice inside the email (to catch those who don’t open attachments). Inform the UK Cochrane Center Soon you will be able to post it on the Consumers website

26. A Community of Consumers CCNet Listserv consumers@lists.cochrane.org consumers@lists.cochrane.org Facebook (multi-lingual) Add “CCNet Cochrane Collaboration” Twitter Follow @CochranConsumer

27. External Recruiting If Cochrane doesn’t have enough consumers registered for your topic, here are some other ideas: People in Research site Involve’s quarterly newsletter UK-based PPI organizations NHS’s PPI resources on Organizations Organization’s PPI links

28. Section 4: Repeat Consumer Participation “Sometimes I find a crucial statement in the ‘discussion’ section of the review e.g., “The adverse effects of these drugs have been selectively reported.” Or “no trials lasted more than eight weeks” that I think should be in the PLS. I will say so and If they ignore me, I don’t work with them again.” – Cochrane Consumer Referee

29. TOP TIPS: Send feedback to consumers regarding the impact of their comments Provide a reason if the Consumer comments are not possible Consider including consumers via Skype

30. Enhancing the Consumer Experience Responding to Consumer Comments on published reviews Email the final product to the consumer referee Simplify consumer referee checklists

31. Section 5: Training Resources “The research world is one that is not open to the general public and what is second nature to most of the Cochrane family, is unknown to others. …” Cochrane Consumer Referee

32. TOP TIPS: Don't take background information for granted. Reassure consumer referees that ‘experts’ are not sought, rather a patient or lay perspective. Direct new consumers to the Cochrane glossary of terms – or create a CRG-specific list

33. Expand Health Literacy Cochrane Journal Club www.cochranejournalclub.com Online Podcasts and Webinars www.cochrane.org/multimedia/ Cochrane Consumer Learning consumers.cochrane.org/resources consumers.cochrane.org/resources

34. Questions? What sort of training tools for consumers would you like to see?

35. Section 6: Measure Consumer Participation Many groups that involve consumers do not formally evaluate the process (Staley 2009).

36. Consumer Participation (According to Archie) Statistics at the beginning of 2011 1102 consumers affiliated with Cochrane 760 are members of CCNet 549 consumers participate or have thought about participating in reviews

37. Reasons for Record Keeping To build up the base of evidence for consumer participation When consumers repeatedly suggest terms to avoid in a PLS, create a ‘jargon busting’ list for new review authors to reference To keep track of your progress and innovations as a group To compare the experiences and outcomes of different models of consumer involvement

38. TOP TIPS: Record Keeping – Using Archie Receive information about new consumers Build up the base of evidence for consumer participation Compare the experiences and outcomes of different models of consumer involvement

39. CCNet Strategic Plan  A new induction process for new consumers  A framework connecting consumer participants  The provision of accessible Cochrane products  Formalized management agreements for CCNet and its Executive

40. Thank you for listening! Any Questions?