title: When Patients Write the Guidelines: Patient Panel Recommendations for the Treatment of Rheumatoid Arthritis.
abstract: OBJECTIVE
  How best to involve patients in the development of clinical practice guideline (CPG) recommendations is not known. We sought to determine the feasibility and value of developing CPG recommendations based on a voting panel composed entirely of patients, with the ultimate goal of comparing the patients' recommendations to ones developed by a physician-dominated voting panel on the same clinical questions.
  
  
  METHODS
  Ten patients with rheumatoid arthritis completed 8 hours of training on evidence-based medicine and guideline development. They constituted a voting panel and, with 2 American College of Rheumatology staff with expertise in CPG development and a physician facilitator, subsequently met at a face-to-face meeting to develop recommendations. They applied the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methodology to formulate recommendations on 18 questions for which there was evidence warranting moderate or high confidence.
  
  
  RESULTS
  The patient panel developed recommendations for 16 of the 18 questions; for the other 2, the panel thought there were insufficient data to support a recommendation. For 13 of the 16 questions, the patient panel recommended the same course of action as did the physician-dominated panel. Differences were due to how the 2 panels valued the balance between benefits and harms.
  
  
  CONCLUSIONS
  Patient and physician-dominated panels developed the same recommendations for most questions for which there was evidence warranting moderate to high confidence. Additional experiences are necessary to advance the evidence necessary to determine what panel composition is optimal to produce the best guidelines.
authors.affiliation: Yale University School of Medicine, New Haven, Connecticut.
authors.forename: Liana
authors.initials: L
authors.lastname: Fraenkel
authors.affiliation: American College of Rheumatology, Atlanta, Georgia.
authors.forename: Amy S
authors.initials: AS
authors.lastname: Miller
authors.affiliation: CreakyJoints, Global Healthy Living Foundation, Upper Nyack, New York.
authors.forename: Kelly
authors.initials: K
authors.lastname: Clayton
authors.affiliation: CreakyJoints, Global Healthy Living Foundation, Upper Nyack, New York.
authors.forename: Rachelle
authors.initials: R
authors.lastname: Crow-Hercher
authors.affiliation: CreakyJoints, Global Healthy Living Foundation, Upper Nyack, New York.
authors.forename: Shantana
authors.initials: S
authors.lastname: Hazel
authors.affiliation: CreakyJoints, Global Healthy Living Foundation, Upper Nyack, New York.
authors.forename: Britt
authors.initials: B
authors.lastname: Johnson
authors.affiliation: CreakyJoints, Global Healthy Living Foundation, Upper Nyack, New York.
authors.forename: Leslie
authors.initials: L
authors.lastname: Rott
authors.affiliation: CreakyJoints, Global Healthy Living Foundation, Upper Nyack, New York.
authors.forename: Whitney
authors.initials: W
authors.lastname: White
authors.affiliation: CreakyJoints, Global Healthy Living Foundation, Upper Nyack, New York.
authors.forename: Carole
authors.initials: C
authors.lastname: Wiedmeyer
authors.affiliation: Mayo Clinic, Rochester, Minnesota.
authors.forename: Victor M
authors.initials: VM
authors.lastname: Montori
authors.affiliation: University of Alabama, Birmingham.
authors.forename: Jasvinder A
authors.initials: JA
authors.lastname: Singh
authors.affiliation: Global Healthy Living Foundation, Upper Nyack, New York.
authors.forename: W Benjamin
authors.initials: WB
authors.lastname: Nowell
mesh_terms: D000328:Adult; D018501:Antirheumatic Agents / Q000009:adverse effects / Q000627:therapeutic use*; D001172:Arthritis, Rheumatoid / Q000175:diagnosis / Q000188:drug therapy*; D001291:Attitude of Health Personnel; D032921:Consensus; D019317:Evidence-Based Medicine; D005240:Feasibility Studies; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D010865:Pilot Projects; D011050:Policy Making; D017410:Practice Guidelines as Topic / Q000592:standards*; D012219:Rheumatology / Q000592:standards*; D018570:Risk Assessment; D012307:Risk Factors; D014956:Writing
chemical_list: D018501:Antirheumatic Agents