Patient participation in psoriasis and psoriatic arthritis outcome research: a report from the GRAPPA 2013 Annual Meeting

Maarten de Wit; Willemina Campbell; Oliver FitzGerald; Dafna D Gladman; Phillip S Helliwell; Jana James; Chris Lindsay; Roland MacDonald; Neil J McHugh; Philip J Mease; Ana-Maria Orbai; Penélope Palominos; Andrew Parkinson; William Tillett; Niti Goel

doi:10.3899/jrheum.140171

Patient participation in psoriasis and psoriatic arthritis outcome research: a report from the GRAPPA 2013 Annual Meeting

J Rheumatol. 2014 Jun;41(6):1206-11. doi: 10.3899/jrheum.140171.

Authors

Affiliations

¹ From the Department of Rheumatology, St. Vincent's University Hospital, Elm Park, Dublin, Ireland; University of Toronto; Toronto Western Research Institute; Psoriatic Arthritis Program, University Health Network, Toronto, Ontario, Canada; University of Leeds, Leeds, UK; Royal National Hospital for Rheumatic Diseases, UK National Health Service (NHS) Foundation Trust, Bath, UK; Swedish Medical Center, University of Washington School of Medicine, Seattle, Washington, USA; Johns Hopkins Arthritis Center, Baltimore, Maryland, USA; Rheumatology Department, Hospital de Clinicas de Porto Alegre, Brazil; Royal National Hospital for Rheumatic Diseases, Bath, UK.M. de Wit, PhD, Patient Research Partner, Amsterdam, The Netherlands; W. Campbell, BA, BEd, LLB, Patient Research Partner, Toronto, Ontario, Canada; O. FitzGerald, MD, FRCPI, FRCP(UK), Newman Clinical Research Professor, Department of Rheumatology, St. Vincent's University Hospital; D.D. Gladman, MD, FRCPC, Professor of Medicine, University of Toronto; Senior Scientist, Toronto Western Research Institute and Director, Psoriatic Arthritis Program, University Health Network; P.S. Helliwell, DM, PhD, FRCP, Senior Lecturer in Rheumatology, University of Leeds; J. James, Patient Research Partner, Bath, UK; C. Lindsay, Patient Research Partner, Thousand Oaks, California, USA; R. MacDonald, Patient Research Partner, Toronto, Ontario, Canada; N.J. McHugh, MBChB, MD, FRCP, FRCPath, Royal National Hospital for Rheumatic Diseases, NHS Foundation Trust; P.J. Mease, MD, Director, Rheumatology Research, Swedish Medical Center, Clinical Professor, University of Washington School of Medicine; A-M. Orbai, MD, MHS, Johns Hopkins Arthritis Center; P. Palominos, MD, Rheumatology Department, Hospital de Clinicas de Porto Alegre; A. Parkinson, Patient Research Partner, Leeds, UK; W. Tillett, BSc, MBChB, MRCP, Royal National Hospital for Rheumatic Diseases; N. Goel, MD, Patient Research Partner, Durham, North Carolina, USA. mp.dewit@vumc.n
² From the Department of Rheumatology, St. Vincent's University Hospital, Elm Park, Dublin, Ireland; University of Toronto; Toronto Western Research Institute; Psoriatic Arthritis Program, University Health Network, Toronto, Ontario, Canada; University of Leeds, Leeds, UK; Royal National Hospital for Rheumatic Diseases, UK National Health Service (NHS) Foundation Trust, Bath, UK; Swedish Medical Center, University of Washington School of Medicine, Seattle, Washington, USA; Johns Hopkins Arthritis Center, Baltimore, Maryland, USA; Rheumatology Department, Hospital de Clinicas de Porto Alegre, Brazil; Royal National Hospital for Rheumatic Diseases, Bath, UK.M. de Wit, PhD, Patient Research Partner, Amsterdam, The Netherlands; W. Campbell, BA, BEd, LLB, Patient Research Partner, Toronto, Ontario, Canada; O. FitzGerald, MD, FRCPI, FRCP(UK), Newman Clinical Research Professor, Department of Rheumatology, St. Vincent's University Hospital; D.D. Gladman, MD, FRCPC, Professor of Medicine, University of Toronto; Senior Scientist, Toronto Western Research Institute and Director, Psoriatic Arthritis Program, University Health Network; P.S. Helliwell, DM, PhD, FRCP, Senior Lecturer in Rheumatology, University of Leeds; J. James, Patient Research Partner, Bath, UK; C. Lindsay, Patient Research Partner, Thousand Oaks, California, USA; R. MacDonald, Patient Research Partner, Toronto, Ontario, Canada; N.J. McHugh, MBChB, MD, FRCP, FRCPath, Royal National Hospital for Rheumatic Diseases, NHS Foundation Trust; P.J. Mease, MD, Director, Rheumatology Research, Swedish Medical Center, Clinical Professor, University of Washington School of Medicine; A-M. Orbai, MD, MHS, Johns Hopkins Arthritis Center; P. Palominos, MD, Rheumatology Department, Hospital de Clinicas de Porto Alegre; A. Parkinson, Patient Research Partner, Leeds, UK; W. Tillett, BSc, MBChB, MRCP, Royal National Hospital for Rheumatic Diseases; N. Goel, MD, Patient Research Partner, Durham, North Carolina, USA.

PMID: 24882853
DOI: 10.3899/jrheum.140171

Abstract

For the first time, 8 patients with psoriatic arthritis (PsA) participated as full delegates at the 2013 Annual Meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA). Patients were invited to provide their perspective for different sessions of the conference program. Before the conference, the patient delegates had a separate meeting to familiarize themselves with the conference program and to gain a better understanding of the vision and objectives of GRAPPA. During the conference, the patient group discussed options for increased involvement in research projects. Herein we summarize the presentations on patient participation in research, the experiences of the patient group, and plans to enhance the patient perspective in psoriasis and PsA research.

Keywords: OUTCOME RESEARCH; PATIENT INVOLVEMENT; PATIENT RESEARCH PARTNER; PATIENT-REPORTED OUTCOMES; PSORIATIC ARTHRITIS.

MeSH terms

Arthritis, Psoriatic*
Biomedical Research*
Humans
Outcome Assessment, Health Care
Patient Participation*
Psoriasis*