Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience.

Sarah E Hempstead,Kelsey Fredkin,Edward T Naureckas,Cade Hovater

doi:10.2196/17875

Abstract

Patient and family participation in guideline development is neither standardized nor uniformly accepted in the guideline development community, despite the 2011 Institute of Medicine’s Guidelines We Can Trust and the Guideline International Network’s GIN-Public Toolkit recommendations. The Cystic Fibrosis Foundation has included patients and/or family members directly in guideline development since 2004. Over time, various strategies for increasing patient and family member participation have been implemented. Surveys of recent patient/family and clinical guidelines committee members have shown that inclusion of individuals with cystic fibrosis and their family members on guidelines committees has provided insight otherwise invisible to clinicians.

Highlights

Cystic fibrosis (CF) is a rare, genetic, life-shortening disease that impacts approximately 35,000 people in the United States [1]
The small population size has resulted in a paucity of evidence addressing many aspects of CF care, which impacts the development of clinical practice guidelines
J Participat Med 2020 | vol 12 | iss. 3 | e17875 | p. 5 development. These voices improve the way the Cystic Fibrosis Foundation (CFF) talks about and develops educational material related to the guidelines

Summary

Introduction

Cystic fibrosis (CF) is a rare, genetic, life-shortening disease that impacts approximately 35,000 people in the United States [1]. Patient and family committee members work with clinicians to develop PICO (person, intervention, comparison, outcome) questions, are encouraged to participate in the literature review with guidance from other committee members, take part in drafting recommendation statements, and vote alongside other committee members on the final recommendation statements They are encouraged to share their expertise from living with CF and experience with the guideline topic. The focus group was able to provide insight from their experience to help to fill a gap in the CF-specific literature [26] This supplemental group allowed the committee to hear from multiple individuals with CF and spouses of adults with CF, ensuring that broader perspectives and experiences informed guideline development. Anyone: these opportunities are open to all patients and families

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Conclusion

Findings

11. G-I-N Public Toolkit