The document discusses the Guidelines International Network (G-I-N) and G-I-N North America. It summarizes that G-I-N is a global network of guideline organizations that aims to reduce duplication of effort and promote best practices in guideline development. It also discusses G-I-N's consumer involvement activities through G-I-N PUBLIC and the toolkit it has created on patient and public involvement in guidelines. Finally, it promotes partnership opportunities between G-I-N North America and CUE to further consumer engagement in guideline development.

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: marguerite.a.koster@kp.org

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. G-I-N Website: www.g-i-n.net

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. G-I-N Public Website: www.ginppi.wetpaint.com

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. G-I-N Activities & Resources:
Conferences, Workshops, Webinars, Publications

8. enGINe Newsletter http://www.g-i-n.net/newsletter/engine
Subscribe to the newsletter

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. 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
http://www.iom.edu/Reports/2011/Clinical-Practice-Guidelines-We-Can-Trust/Standards.aspx

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. Strong Support for CUE Efforts

13. G-I-N North America – Get Involved!
• Join the G-I-N North America mailing list
– Send an e-mail to: yerado.abrahamian@kp.org
• 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:
http://www.g-i-n.net/activities/g-i-n-na/g-i-n-na-events-activities/webinar-series
• 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. 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. 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
http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/patfamilyengageguide/
– Institute for Patient- and Family-Center Care (IPFCC): http://www.ipfcc.org/
– Institute for HealthCare Improvement (IHI): http://www.ihi.org/explore/PFCC/Pages/default.aspx
– Individual hospital and health care delivery systems and organizations

16. http://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/index.html

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. 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. PFCC
What Organizations Look For…
Let’s add “Evidence
Based” to the list!
 Diversity

20. QUESTIONS/DISCUSSION