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Consumer Input: Top Tips for Managing Editors

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Title: Consumers in Systematic Reviews Author: Catherine McIlwain Last modified by: Catherine McIlwain Created Date: 3/15/2011 7:41:20 AM Document presentation format – PowerPoint PPT presentation

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Title: Consumer Input: Top Tips for Managing Editors


1
Consumer Input Top Tips for Managing Editors
  • Catherine McIlwain
  • cmcilwain_at_cochrane.org
  • The Cochrane Collaboration Consumer Co-ordinator

2
Todays Goals
  • CRGs Access to consumers
  • Repeat consumer participation
  • Measurable consumer participation

3
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

4
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

5
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)

6
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)

7
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

8
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

9
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

10
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

11
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
    email - I hope the use of Skype really takes off
    in the Collaboration. Cochrane Consumer
    Referee 

12
Enhancing the consumer experience
  • Providing feedback
  • Integrate using Skype
  • Improving plain language
  • Simplify consumer referee checklists

13
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

14
Expanding Health Literacy
  • Cochrane Consumer Learning consumers.cochrane.org/
    resources

15
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?
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