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This paper is in the following e-collection/theme issue:

Opinion: Viewpoints, Perspectives, and Opinion papers by patients and patient advocates (not grant supported) (40) Participatory Medicine & E-Patients (978) Knowledge Translation and Implementation Science (757) Participatory Design and Participatory Research (511)

Published on in Vol 12, No 3 (2020): Jul-Sep

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/17875, first published .
Doctor discusses child's health with father in a medical examination room.

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

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

Authors of this article:

Sarah E Hempstead1 Author Orcid Image ;   Kelsey Fredkin1 Author Orcid Image ;   Cade Hovater2 Author Orcid Image ;   Edward T Naureckas3 Author Orcid Image
Article Authors Cited by (8) Tweetations (3) Metrics

Journals

  1. Lim B, Chhina H, Pike I, Brussoni M, Cooper A. Methodological Challenges in Investigating Supracondylar Fractures of the Humerus From a Child’s Viewpoint: Evolution of Study Protocol. JMIR Research Protocols 2020;9(11):e21816 View
  2. Diener B, Huertero F, Stables-Carney T, Hoelzer M, Kier C. A new era in cystic fibrosis care: always changing and adapting. Current Opinion in Pediatrics 2023;35(5):603 View
  3. Viprey M, Mougeot F, Dima A, Haesebaert J, Occelli P, Durieu I, Rouzé H, Reynaud Q, Touzet S. A Participatory Approach Involving Patients with Cystic Fibrosis and Healthcare Professionals for the Co-Design of an Adherence-Enhancing Intervention Toolkit. Patient Preference and Adherence 2023;Volume 17:995 View
  4. Buba M, Krueger C, Gill P. Partnering With Patients and Families to Champion Deimplementation and Reduce Low-Value Care. Hospital Pediatrics 2024;14(10):e443 View
  5. Iroz C, Godfrey M, Early C, Dell B, Boyle A, Tallarico E, Reed J, Johnson J. A Qualitative Study to Improve How We Partner With Patients and Families in Healthcare Improvement Collaboratives. Health Expectations 2025;28(3) View
  6. Diener B, Berdella M, DeCelie-Germana J, Stables-Carney T, Kier C. Transforming Care Models in Cystic Fibrosis: A Review. Healthcare 2025;13(23):3022 View
  7. Colantonio, MD M, Marcano, MD C, Chapman, MD K. Cystic Fibrosis in West Virginia: A Review and Update. West Virginia Medical Journal 2025;121(4):12 View
  8. Li F, Liu C, Qing Y, Zhu Y, Wang H, Lu X, Lai Y, Ning J, Sun L, Zhang M, Pan B, Li D, Wang Z, Wu C, Ma J, Chen X. From Barriers to Competence: Multi‐Institutional Exploratory Study of Perceived Competence, Attitudes, and Barriers in E‐Patient Communication Among Chinese Medical Students. MedComm – Future Medicine 2026;5(2) View