Let's Talk about Inclusion: A Report on Patient Research Partner Involvement in the GRAPPA 2015 Annual Meeting

Maarten de Wit; Willemina Campbell; Laura C Coates; Dafna D Gladman; Jana James; Chris A Lindsay; Roland MacDonald; Anna R Moverley; Alexis Ogdie; Ana-Maria Orbai; Denis O'Sullivan; Andrew Parkinson; Ingrid Steinkoenig; William Tillett; Niti Goel

doi:10.3899/jrheum.160117

Let's Talk about Inclusion: A Report on Patient Research Partner Involvement in the GRAPPA 2015 Annual Meeting

J Rheumatol. 2016 May;43(5):970-3. doi: 10.3899/jrheum.160117.

Authors

Affiliations

¹ From the VU Medical Centre, Amsterdam, The Netherlands; Krembil Research Institute of Toronto Western Hospital, and the University of Toronto, and the Psoriatic Arthritis Program, University Health Network, Toronto, Ontario, Canada; Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK; University of Pennsylvania, Philadelphia, Pennsylvania, USA; Johns Hopkins Division of Rheumatology, Baltimore, Maryland, USA; St. Vincent's University Hospital, Dublin, Ireland; Cleveland Clinic, Cleveland, Ohio, USA; Royal National Hospital for Rheumatic Diseases, Bath, UK; Duke University School of Medicine, Durham, North Carolina, USA.M. de Wit, PhD, Patient Research Partner, VU Medical Centre, Amsterdam, The Netherlands; W. Campbell, BEd, LLB, Patient Research Partner, Toronto Western Hospital; L.C. Coates, MBChB, PhD, UK National Institute for Health Research Clinical Lecturer, Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds; D.D. Gladman, MD, FRCPC, Professor of Medicine, University of Toronto, Senior Scientist, Krembil Research Institute, Director, Psoriatic Arthritis Program, University Health Network; J. James, Patient Research Partner; C.A. Lindsay, PharmD, Patient Research Partner; R. MacDonald, Patient Research Partner; A.R. Moverley, MB, BS, BSc, MRCP, Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds; A. Ogdie, University of Pennsylvania; A.M. Orbai, MD, MHS, Johns Hopkins Division of Rheumatology; D. O'Sullivan, BE, Patient Research Partner; A. Parkinson, Patient Research Partner; I. Steinkoenig, BA, Patient Research Partner; W. Tillett, BSc, MB ChB, PhD, MRCP, Royal National Hospital for Rheumatic Diseases; N. Goel, MD, Patient Research Partner, Duke University School of Medicine. mp.dewit@vumc.nl.
² From the VU Medical Centre, Amsterdam, The Netherlands; Krembil Research Institute of Toronto Western Hospital, and the University of Toronto, and the Psoriatic Arthritis Program, University Health Network, Toronto, Ontario, Canada; Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK; University of Pennsylvania, Philadelphia, Pennsylvania, USA; Johns Hopkins Division of Rheumatology, Baltimore, Maryland, USA; St. Vincent's University Hospital, Dublin, Ireland; Cleveland Clinic, Cleveland, Ohio, USA; Royal National Hospital for Rheumatic Diseases, Bath, UK; Duke University School of Medicine, Durham, North Carolina, USA.M. de Wit, PhD, Patient Research Partner, VU Medical Centre, Amsterdam, The Netherlands; W. Campbell, BEd, LLB, Patient Research Partner, Toronto Western Hospital; L.C. Coates, MBChB, PhD, UK National Institute for Health Research Clinical Lecturer, Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds; D.D. Gladman, MD, FRCPC, Professor of Medicine, University of Toronto, Senior Scientist, Krembil Research Institute, Director, Psoriatic Arthritis Program, University Health Network; J. James, Patient Research Partner; C.A. Lindsay, PharmD, Patient Research Partner; R. MacDonald, Patient Research Partner; A.R. Moverley, MB, BS, BSc, MRCP, Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds; A. Ogdie, University of Pennsylvania; A.M. Orbai, MD, MHS, Johns Hopkins Division of Rheumatology; D. O'Sullivan, BE, Patient Research Partner; A. Parkinson, Patient Research Partner; I. Steinkoenig, BA, Patient Research Partner; W. Tillett, BSc, MB ChB, PhD, MRCP, Royal National Hospital for Rheumatic Diseases; N. Goel, MD, Patient Research Partner, Duke University School of Medicine.

PMID: 27134272
DOI: 10.3899/jrheum.160117

Abstract

Members of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) have worked since 2012 to include the patient perspective in their psoriatic arthritis (PsA) research as well as in their annual meetings. Herein, patient research partners (PRP) report the progress made in their experience at these GRAPPA meetings and discuss their perception of the challenges that remain in ensuring that patients have a voice in PsA outcome research.

Keywords: GRAPPA; PATIENT PARTICIPATION; PATIENT RESEARCH PARTNERS; PSORIASIS; PSORIATIC ARTHRITIS.

MeSH terms

Arthritis, Psoriatic / therapy*
Decision Making
Humans
Patient Participation*
Psoriasis / therapy*