Consumer Input: Top Tips for Managing Editors Catherine McIlwain The Cochrane Collaboration Consumer Co-ordinator

Today’s Goals: CRG’s Access to consumers Repeat consumer participation Measurable consumer participation

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

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

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)

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)

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

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

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

TOP TIPS: Repeat Consumer Participation Consider including consumers via Skype Send feedback to consumers regarding the impact of their comments Consumer Comments on published reviews

Involving Consumers “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 - I hope the use of Skype really takes off in the Collaboration.” – Cochrane Consumer Referee

Enhancing the consumer experience Providing feedback Integrate using Skype Improving plain language Simplify consumer referee checklists

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

Expanding Health Literacy Cochrane Consumer Learning consumers.cochrane.org/resources consumers.cochrane.org/resources

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?