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Panel: CUE in Partnership- Marguerite Koster


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Panel: CUE in Partnership- Marguerite Koster

  1. 1. CUE in Partnership: The Guidelines International Network (G-I-N) and G-I-N North America CUE Annual Meeting, July 26, 2013 Marguerite Koster, MA, MFT Chair-Elect, G-I-N North America e-mail:
  2. 2. What is G-I-N? • A global network, founded in 2002, comprising 90+ organizations and 80 individuals from 43 countries and 5 continents • Provides a network and partnerships for guideline organizations, implementers, consumers, end- users, researchers, students and other stakeholders • Assists members in reducing duplication of effort and improving the efficiency and effectiveness of evidence-based guideline development, adaptation, dissemination and implementation • Promotes best practice through the development of opportunities for learning and building capacity • Establishes high-quality standards for guideline development, adaptation, dissemination and implementation
  3. 3. G-I-N Website:
  4. 4. Consumer Involvement: G-I-N PUBLIC • The Guidelines International Network Patient and Public Involvement (PPI) Working Group • Connects researchers, health professionals and consumers interested in promoting ways to inform and involve the public in clinical guideline activity around the world • Posts information about projects in various countries, handbooks on public involvement, literature references • Uses a wiki website to exchange information about involving patients and the public in guideline development • Hosts the G-I-N Public discussion group for people to share ideas and views
  5. 5. G-I-N Public Website:
  6. 6. G-I-N Public’s Toolkit on Patient and Public Involvement in Guidelines • Assembles international experiences and best practice examples of successful patient involvement • Provides support to guideline developers considering patient involvement in guideline development or dissemination • Developed by G-I-N PPI Workgroup (includes CUE’s own Carol Sakala) • Chapters include: – How to conduct public and target consultation – How to recruit and support patient/public members – How the Chair can facilitate PPI – How to develop Patient versions of guidelines – Involving patients and the public in guideline dissemination – How guidelines can support patient involvement in the clinic
  7. 7. G-I-N Activities & Resources: Conferences, Workshops, Webinars, Publications
  8. 8. enGINe Newsletter Subscribe to the newsletter
  9. 9. What is G-I-N North America (G-I-N NA)? • Provides a network for North American guideline users, developers, and other stakeholders to form partnerships and discuss regional guideline issues • Steering Group launched in April/May 2011 (Rebecca Burkholder is the current consumer representative) • Organizes and promotes collaboration, education and regional events • Promotes adoption of evidence-based guideline standards • Strives to improve the efficiency and effectiveness of evidence-based guideline development, adaptation, dissemination, and implementation • Promotes relationships between G-I-N and the No. American guideline community • Interacts with various G-I-N groups (such as G-I-N PUBLIC)
  10. 10. Promotes G-I-N & IOM Standards for Developing Trustworthy Clinical Practice Guidelines IOM Standard 3. Guideline Development Group (GDG) Composition 3.2 Patient and public involvement should be facilitated by including (at least at the time of clinical question formulation and draft CPG review) a current or former patient, and a patient advocate or patient/consumer organization representative in the GDG
  11. 11. Consumer contributions to Guideline Development Groups (GDGs) Encourages Consumer Involvement in Guidelines What are the Possibilities? Common Sense Perspective Skepticism Respect for harms Patient education Shared decisions
  12. 12. Strong Support for CUE Efforts
  13. 13. G-I-N North America – Get Involved! • Join the G-I-N North America mailing list – Send an e-mail to: • Attend the monthly webinars – How to Involve Patients and the Public in Guideline Development: The G-I-N PUBLIC Toolkit (October, 2012) – All webinars available for online viewing at: • Participate in G-I-N and G-I-N NA regional events – E-GAPPS Conference (Evidence-based Guidelines Affecting Policy, Practice, and Stakeholders–May, 2012) in partnership with the New York Academy of Medicine – Next regional event likely in 2014/2015 • Be the consumer representative on the G-I-N NA Steering Group • Joint the G-I-N PUBLIC Discussion Forum
  14. 14. Potential Areas for Partnerships/Joint Efforts • Immediate: – Develop a G-I-N NA webinar featuring a case study(ies) of CUE member involvement in guideline activities – Involve CUE members and CPG developers who have worked together on specific guideline projects • Long-term: – Build on CUE’s efforts to match consumers with North American guideline developers? – Foster CUE participation in G-I-N North America regional conferences and events (as speakers & attendees)
  15. 15. Patient and Family Centered Care (PFCC) Initiatives – Get Involved! • Foster greater participation of CUE members in Patient and Family Centered Care (PFCC) activities at the local and national levels – “…an approach to the planning, delivery and evaluation of health care that is grounded in mutually beneficial partnerships among patients, families, and health care practitioners. By truly partnering with patients and families – not only involving them in decisions about their care, but also gaining the benefit of their help and insights to better plan and deliver care – patients can achieve better outcomes, and hospitals can improve the care for all patients and increase staff satisfaction.” (American Hospital Association) • Ongoing efforts – AHRQ Guide to Patient and Family Engagement in Hospital Quality & Safety – Institute for Patient- and Family-Center Care (IPFCC): – Institute for HealthCare Improvement (IHI): – Individual hospital and health care delivery systems and organizations
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  17. 17. PFCC Get Involved, Promote Evidence-Based Initiatives Examples of consumer/patient involvement at the hospital and health system delivery levels: • Focus Groups • Survey Panels • Advisory Councils • Quality & Safety Committees
  18. 18. PFCC Get Involved, Promote Evidence-Based Initiatives Kaiser Permanente Member Voice Online panel of members who have agreed to be available for online surveys, focus group recruitment, and other research projects.
  19. 19. PFCC What Organizations Look For… Let’s add “Evidence Based” to the list!  Diversity