Successful Stepwise Development of Patient Research Partnership: 14 Years' Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT)

被引：36

作者：

de Wit, Maarten ^{[1
,2
]}

Kirwan, John R. ^{[3
]}

Tugwell, Peter ^{[4
]}

Beaton, Dorcas ^{[5
]}

Boers, Maarten ^{[6
]}

Brooks, Peter ^{[7
]}

Collins, Sarah ^{[8
]}

Conaghan, Philip G. ^{[9
]}

D'Agostino, Maria-Antonietta ^{[10
]}

Hofstetter, Cathie ^{[11
]}

Hughes, Rod ^{[12
]}

Leong, Amye ^{[13
,14
,15
]}

Lyddiatt, Ann ^{[11
]}

March, Lyn ^{[16
,17
,18
]}

May, James ^{[19
]}

Montie, Pamela ^{[11
,20
]}

Richards, Pamela ^{[3
,21
]}

Simon, Lee S. ^{[22
]}

Singh, Jasvinder A. ^{[23
,24
,25
]}

Strand, Vibeke ^{[26
]}

Voshaar, Marieke ^{[1
,27
]}

Bingham, Clifton O., III ^{[28
]}

Gossec, Laure ^{[29
,30
]}

机构：

[1] OMERACT Patient Res Partner, Amsterdam, Netherlands

[2] Vrije Univ Amsterdam, Med Ctr, EMGO Inst, Dept Med Humanities, Boechorststr 7, NL-1081 BT Amsterdam, Netherlands

[3] Univ Bristol, Bristol Royal Infirm, Acad Rheumatol Unit, Bristol BS2 8HW, Avon, England

[4] Univ Ottawa, Dept Med, Ottawa, ON, Canada

[5] Univ Toronto, St Michaels Hosp, Li Ka Shing Knowledge Inst, Musculoskeletal Hlth & Outcomes Res, Toronto, ON, Canada

[6] Vrije Univ Amsterdam, Med Ctr, Amsterdam Rheumatol & Immunol Ctr, Dept Epidemiol & Biostat, Amsterdam, Netherlands

[7] Univ Melbourne, Ctr Hlth Policy, Sch Populat & Global Hlth, Melbourne, Vic, Australia

[8] OMERACT Patient Res Partner, London, England

[9] Univ Leeds, Leeds Inst Rheumat & Musculoskeletal Med, NIHR Leeds Musculoskeletal Biomed Res Unit, Leeds, W Yorkshire, England

[10] Univ Versailles St Quentin Yvelines, Hop Ambroise Pare, AP HP, Dept Rheumatol, Boulogne, France

[11] OMERACT Patient Res Partner, Vancouver, BC, Canada

[12] Ashford St Peters Fdn Trust Hosp, Surrey, England

[13] OMERACT Patient Res Partner, Santa Barbara, CA USA

[14] Healthy Motivat, Santa Barbara, CA 93108 USA

[15] Global Alliance Musculoskeletal Hlth, Bone & Joint Decade, Truro, Cornwall, England

[16] Sydney Med Sch, Inst Bone & Joint Res, Sydney, NSW, Australia

[17] Univ Sydney, Sch Publ Hlth, Sydney, NSW, Australia

[18] Royal North Shore, Dept Rheumatol, St Leonards, NSW, Australia

[19] OMERACT Patient Res Partner, Seattle, WA USA

[20] Arthrit Res Ctr Canada, Arthrit Patient Advisory Board, Richmond, BC, Canada

[21] OMERACT Patient Res Partner, Bristol, Avon, England

[22] SDG LLC, Cambridge, MA 02139 USA

[23] VA Med Ctr, Med Serv, Birmingham, AL USA

[24] Univ Alabama Birmingham, Sch Med, Sch Publ Hlth, Dept Med,Div Epidemiol, Birmingham, AL 35294 USA

[25] Mayo Clin, Coll Med, Dept Orthoped Surg, Rochester, MN 55905 USA

[26] Stanford Univ, Sch Med, Div Immunol Rheumatol, Palo Alto, CA 94304 USA

[27] Univ Twente, Dept Psychol Hlth & Technol, Enschede, Netherlands

[28] Johns Hopkins Univ, Div Rheumatol, Baltimore, MD USA

[29] UPMC Univ Paris 06, Sorbonne Univ, Inst Pierre Louis Epidemiol & Sante Publ, GRC-08, Paris, France

[30] Hop La Pitie Salpetriere, AP HP, Rheumatol Dept, Paris, France

来源：

PATIENT-PATIENT CENTERED OUTCOMES RESEARCH | 2017年 / 10卷 / 02期

关键词：

QUALITY-OF-LIFE; PUBLIC INVOLVEMENT; HEALTH-CARE; RECOMMENDATIONS; ENGAGEMENT; PARTICIPATION; PERSPECTIVE; IMPACT;

D O I：

10.1007/s40271-016-0198-4

中图分类号：

R19 [保健组织与事业（卫生事业管理）];

学科分类号：

摘要：

There is increasing interest in making patient participation an integral component of medical research. However, practical guidance on optimizing this engagement in healthcare is scarce. Since 2002, patient involvement has been one of the key features of the Outcome Measures in Rheumatology (OMERACT) international consensus effort. Based on a review of cumulative data from qualitative studies and internal surveys among OMERACT participants, we explored the potential benefits and challenges of involving patient research partners in conferences and working group activities. We supplemented our review with personal experiences and reflections regarding patient participation in the OMERACT process. We found that between 2002 and 2016, 67 patients have attended OMERACT conferences, of whom 28 had sustained involvement; many other patients contributed to OMERACT working groups. Their participation provided face validity to the OMERACT process and expanded the research agenda. Essential facilitators have been the financial commitment to guarantee sustainable involvement of patients at these conferences, procedures for recruitment, selection and support, and dedicated time allocated in the program for patient issues. Current challenges include the representativeness of the patient panel, risk of pseudo-professionalization, and disparity in patients' and researchers' perception of involvement. In conclusion, OMERACT has embedded long-term patient involvement in the consensus-building process on the measurement of core health outcomes. This integrative process continues to evolve iteratively. We believe that the practical points raised here can improve participatory research implementation.

引用

页码：141 / 152

页数：12

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