title: Recommendations for the Involvement of Patient Research Partners (PRP) in OMERACT Working Groups. A Report from the OMERACT 2014 Working Group on PRP.
abstract: OBJECTIVE
  Patient participation in research is increasing; however, practical guidelines to enhance this participation are lacking. Specifically within the Outcome Measures in Rheumatology (OMERACT) organization, although patients have participated in OMERACT meetings since 2002, consensus about the procedures for involving patients in working groups has not been formalized. The objective is to develop a set of recommendations regarding patient research partner (PRP) involvement in research working groups.
  
  
  METHODS
  We conducted a systematic literature review on recommendations/guidelines of PRP involvement in research; elaborated a structured consensus process involving multiple participants to develop a set of recommendations; and sought endorsement of recommendations by OMERACT.
  
  
  RESULTS
  In the 18 articles included in the literature review, there was general agreement on the broad concepts for recommendations covering PRP involvement in research although they were heterogeneous in detail. Most considered PRP involvement in all phases of research with early engagement, training, and support important, but details on the content were scarce. This review informed a larger consensus-building process regarding PRP inclusion in OMERACT research. Three overarching principles and 8 recommendations were developed, discussed, and refined at OMERACT 2014. The guiding principles were endorsed during the OMERACT plenary session.
  
  
  CONCLUSIONS
  These recommendations for PRP involvement in OMERACT research reinforce the importance of patient participation throughout the research process as integral members. Although the applicability of the recommendations in other research contexts should be assessed, the generalizability is expected to be high. Future research should evaluate their implementation and their effect on outcome development.
authors: From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology. Peter_cheung@nuhs
authors: Peter P
authors: PP
authors: Cheung
authors: From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.
authors: Maarten
authors: M
authors: de Wit
authors: From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.
authors: Clifton O
authors: CO
authors: Bingham
authors: From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.
authors: John R
authors: JR
authors: Kirwan
authors: From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.
authors: Amye
authors: A
authors: Leong
authors: From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.
authors: Lyn M
authors: LM
authors: March
authors: From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.
authors: Pam
authors: P
authors: Montie
authors: From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.
authors: Marieke
authors: M
authors: Scholte-Voshaar
authors: From the Division of Rheumatology, National University Hospital, Singapore; Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Healthy Motivation, Bone and Joint Decade, Santa Barbara, California, USA; Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital, St. Leonards, New South Wales, Australia; Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada; Department of Psychology, Health and Technology, University of Twente, Enschede, The Netherlands; Sorbonne Universités, Université Pierre et Marie Curie (UPMC) Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, F-75013, Paris, France.P.P. Cheung, PhD, FRACP, Division of Rheumatology, National University Hospital; M. de Wit, PhD, Medical Humanities, VU Medical Centre; C.O. Bingham 3rd, MD, Division of Rheumatology, Johns Hopkins University; J.R. Kirwan, MD, FRCP, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; A. Leong, MBA, Healthy Motivation, Bone and Joint Decade; L.M. March, PhD, FRACP, Institute of Bone and Joint Research and Sydney Medical School and School of Public Health, University of Sydney, and Department of Rheumatology, Royal North Shore Hospital; P. Montie, Arthritis Patient Advisory Board of the Arthritis Research Centre of Canada; M. Scholte-Voshaar, MSc, Department of Psychology, Health and Technology, University of Twente; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology.
authors: Laure
authors: L
authors: Gossec
mesh_terms: D003245:Consensus Statements as Topic; D005260:Female; D006801:Humans; D008297:Male; D017063:Outcome Assessment, Health Care; D010358:Patient Participation / Q000706:statistics & numerical data*; D017410:Practice Guidelines as Topic; D012106:Research; D012216:Rheumatic Diseases / Q000175:diagnosis / Q000188:drug therapy; D012219:Rheumatology / Q000592:standards*
keywords: OMERACT; PATIENT INVOLVEMENT; PATIENT RESEARCH PARTNERS; RECOMMENDATIONS; RHEUMATOLOGY RESEARCH