Successful Stepwise Development of Patient Research Partnership: 14 Years’ Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT)
Identifieur interne : 001695 ( Main/Exploration ); précédent : 001694; suivant : 001696Successful Stepwise Development of Patient Research Partnership: 14 Years’ Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT)
Auteurs : Maarten De Wit [Pays-Bas] ; John R. Kirwan ; Peter Tugwell ; Dorcas Beaton ; Maarten Boers [Pays-Bas] ; Peter Brooks ; Sarah Collins [Royaume-Uni] ; Philip G. Conaghan [Royaume-Uni] ; Maria-Antonietta D Gostino [France] ; Cathie Hofstetter ; Rod Hughes [Royaume-Uni] ; Amye Leong [États-Unis] ; Ann Lyddiatt ; Lyn March [Australie] ; James May [États-Unis] ; Pamela Montie ; Pamela Richards [Royaume-Uni] ; Lee S. Simon [États-Unis] ; Jasvinder A. Singh [États-Unis] ; Vibeke Strand [États-Unis] ; Marieke Voshaar [Pays-Bas] ; Clifton O. Bingham [États-Unis] ; Laure Gossec [France]Source :
- The Patient [ 1178-1653 ] ; 2016.
Abstract
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.
Url:
DOI: 10.1007/s40271-016-0198-4
PubMed: 27704486
PubMed Central: 5362656
Affiliations:
- Australie, France, Pays-Bas, Royaume-Uni, États-Unis
- Alabama, Angleterre, Californie, Grand Londres, Hollande-Septentrionale, Maryland, Massachusetts, Minnesota, Nouvelle-Galles du Sud, Washington (État)
- Amsterdam, Londres
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Singh</name><affiliation wicri:level="2"><nlm:aff id="Aff22"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 0419 1326</institution-id><institution-id institution-id-type="GRID">grid.280808.a</institution-id><institution></institution><institution>Medicine Service, VA Medical Center,</institution></institution-wrap>Birmingham, AL USA</nlm:aff><country>États-Unis</country><placeName><region type="state">Alabama</region></placeName><wicri:cityArea>Birmingham</wicri:cityArea></affiliation><affiliation wicri:level="2"><nlm:aff id="Aff23"><institution-wrap><institution-id institution-id-type="ISNI">0000000106344187</institution-id><institution-id institution-id-type="GRID">grid.265892.2</institution-id><institution>Division of Epidemiology at School of Public Health, Department of Medicine at School of Medicine,</institution><institution>University of Alabama,</institution></institution-wrap>Birmingham, AL 35294-0022 USA</nlm:aff><country xml:lang="fr">États-Unis</country><placeName><region type="state">Alabama</region></placeName><wicri:cityArea>Birmingham</wicri:cityArea></affiliation><affiliation wicri:level="2"><nlm:aff id="Aff24"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 0459 167X</institution-id><institution-id institution-id-type="GRID">grid.66875.3a</institution-id><institution>Department of Orthopedic Surgery,</institution><institution>Mayo Clinic College of Medicine,</institution></institution-wrap>Rochester, MN 55905 USA</nlm:aff><country xml:lang="fr">États-Unis</country><placeName><region type="state">Minnesota</region></placeName><wicri:cityArea>Rochester</wicri:cityArea></affiliation></author><author><name sortKey="Strand, Vibeke" sort="Strand, Vibeke" uniqKey="Strand V" first="Vibeke" last="Strand">Vibeke Strand</name><affiliation wicri:level="2"><nlm:aff id="Aff25"><institution-wrap><institution-id institution-id-type="ISNI">0000000419368956</institution-id><institution-id institution-id-type="GRID">grid.168010.e</institution-id><institution>Division Immunology/Rheumatology,</institution><institution>Stanford University School of Medicine,</institution></institution-wrap>Palo Alto, CA USA</nlm:aff><country>États-Unis</country><placeName><region type="state">Californie</region></placeName><wicri:cityArea>Palo Alto</wicri:cityArea></affiliation></author><author><name sortKey="Voshaar, Marieke" sort="Voshaar, Marieke" uniqKey="Voshaar M" first="Marieke" last="Voshaar">Marieke Voshaar</name><affiliation wicri:level="3"><nlm:aff id="Aff1">OMERACT Patient Research Partner, Amsterdam, The Netherlands</nlm:aff><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>OMERACT Patient Research Partner, Amsterdam</wicri:regionArea><placeName><settlement type="city">Amsterdam</settlement><region nuts="2" type="province">Hollande-Septentrionale</region></placeName></affiliation><affiliation wicri:level="1"><nlm:aff id="Aff26"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 0399 8953</institution-id><institution-id institution-id-type="GRID">grid.6214.1</institution-id><institution>Department of Psychology, Health and Technology,</institution><institution>University of Twente,</institution></institution-wrap>Enschede, The Netherlands</nlm:aff><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Enschede</wicri:regionArea></affiliation></author><author><name sortKey="Bingham, Clifton O" sort="Bingham, Clifton O" uniqKey="Bingham C" first="Clifton O." last="Bingham">Clifton O. Bingham</name><affiliation wicri:level="2"><nlm:aff id="Aff27"><institution-wrap><institution-id institution-id-type="ISNI">0000 0001 2171 9311</institution-id><institution-id institution-id-type="GRID">grid.21107.35</institution-id><institution>Division of Rheumatology,</institution><institution>Johns Hopkins University,</institution></institution-wrap>Baltimore, MD USA</nlm:aff><country>États-Unis</country><placeName><region type="state">Maryland</region></placeName><wicri:cityArea>Baltimore</wicri:cityArea></affiliation></author><author><name sortKey="Gossec, Laure" sort="Gossec, Laure" uniqKey="Gossec L" first="Laure" last="Gossec">Laure Gossec</name><affiliation wicri:level="1"><nlm:aff id="Aff28"><institution-wrap><institution-id institution-id-type="ISNI">0000 0001 1955 3500</institution-id><institution-id institution-id-type="GRID">grid.5805.8</institution-id><institution>Institut Pierre Louis d’Epidémiologie et de Santé Publique,</institution><institution>Sorbonne Universités, UPMC Univ Paris 06, GRC-08,</institution></institution-wrap>Paris, France</nlm:aff><country xml:lang="fr">France</country><wicri:regionArea>Paris</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="Aff29"><institution-wrap><institution-id institution-id-type="ISNI">0000 0001 2150 9058</institution-id><institution-id institution-id-type="GRID">grid.411439.a</institution-id><institution>Rheumatology Department,</institution><institution>Pitie-Salpétrière Hospital, AP-HP,</institution></institution-wrap>Paris, France</nlm:aff><country xml:lang="fr">France</country><wicri:regionArea>Paris</wicri:regionArea></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PMC</idno><idno type="pmid">27704486</idno><idno type="pmc">5362656</idno><idno type="url">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5362656</idno><idno type="RBID">PMC:5362656</idno><idno type="doi">10.1007/s40271-016-0198-4</idno><date when="2016">2016</date><idno type="wicri:Area/Pmc/Corpus">000E07</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Corpus" wicri:corpus="PMC">000E07</idno><idno type="wicri:Area/Pmc/Curation">000C68</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Curation">000C68</idno><idno type="wicri:Area/Pmc/Checkpoint">000594</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Checkpoint">000594</idno><idno type="wicri:source">PubMed</idno><idno type="wicri:Area/PubMed/Corpus">000E94</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Corpus" wicri:corpus="PubMed">000E94</idno><idno type="wicri:Area/PubMed/Curation">000E91</idno><idno type="wicri:explorRef" wicri:stream="PubMed" wicri:step="Curation">000E91</idno><idno type="wicri:Area/PubMed/Checkpoint">000E91</idno><idno type="wicri:explorRef" wicri:stream="Checkpoint" wicri:step="PubMed">000E91</idno><idno type="wicri:Area/Ncbi/Merge">003C57</idno><idno type="wicri:Area/Ncbi/Curation">003C57</idno><idno type="wicri:Area/Ncbi/Checkpoint">003C57</idno><idno type="wicri:doubleKey">1178-1653:2016:De Wit M:successful:stepwise:development</idno><idno type="wicri:Area/Main/Merge">001690</idno><idno type="wicri:Area/Main/Curation">001695</idno><idno type="wicri:Area/Main/Exploration">001695</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en" level="a" type="main">Successful Stepwise Development of Patient Research Partnership: 14 Years’ Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT)</title><author><name sortKey="De Wit, Maarten" sort="De Wit, Maarten" uniqKey="De Wit M" first="Maarten" last="De Wit">Maarten De Wit</name><affiliation wicri:level="3"><nlm:aff id="Aff1">OMERACT Patient Research Partner, Amsterdam, The Netherlands</nlm:aff><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>OMERACT Patient Research Partner, Amsterdam</wicri:regionArea><placeName><settlement type="city">Amsterdam</settlement><region nuts="2" type="province">Hollande-Septentrionale</region></placeName></affiliation><affiliation wicri:level="1"><nlm:aff id="Aff2"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 0435 165X</institution-id><institution-id institution-id-type="GRID">grid.16872.3a</institution-id><institution>Department of Medical Humanities,</institution><institution>VU University Medical Centre/EMGO+ instituut,</institution></institution-wrap>Van der Boechorststraat 7, 1081 BT Amsterdam, The Netherlands</nlm:aff><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Van der Boechorststraat 7, 1081 BT Amsterdam</wicri:regionArea><wicri:noRegion>1081 BT Amsterdam</wicri:noRegion></affiliation></author><author><name sortKey="Kirwan, John R" sort="Kirwan, John R" uniqKey="Kirwan J" first="John R." last="Kirwan">John R. Kirwan</name><affiliation><nlm:aff id="Aff3"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 1936 7603</institution-id><institution-id institution-id-type="GRID">grid.5337.2</institution-id><institution>Academic Rheumatology Unit, Bristol Royal Infirmary,</institution><institution>University of Bristol,</institution></institution-wrap>Bristol, BS2 8HW UK</nlm:aff><wicri:noCountry code="subfield">BS2 8HW UK</wicri:noCountry></affiliation></author><author><name sortKey="Tugwell, Peter" sort="Tugwell, Peter" uniqKey="Tugwell P" first="Peter" last="Tugwell">Peter Tugwell</name><affiliation><nlm:aff id="Aff4"><institution-wrap><institution-id institution-id-type="ISNI">0000 0001 2182 2255</institution-id><institution-id institution-id-type="GRID">grid.28046.38</institution-id><institution>Department of Medicine,</institution><institution>University of Ottawa,</institution></institution-wrap>Ottawa, ON Canada</nlm:aff><wicri:noCountry code="subfield">ON Canada</wicri:noCountry></affiliation></author><author><name sortKey="Beaton, Dorcas" sort="Beaton, Dorcas" uniqKey="Beaton D" first="Dorcas" last="Beaton">Dorcas Beaton</name><affiliation><nlm:aff id="Aff5"><institution-wrap><institution-id institution-id-type="GRID">grid.17063.33</institution-id><institution>Musculoskeletal Health and Outcomes Research,</institution><institution>Li Ka Shing Knowledge Institute, St Michael’s Hospital, University of Toronto,</institution></institution-wrap>Toronto, ON Canada</nlm:aff><wicri:noCountry code="subfield">ON Canada</wicri:noCountry></affiliation></author><author><name sortKey="Boers, Maarten" sort="Boers, Maarten" uniqKey="Boers M" first="Maarten" last="Boers">Maarten Boers</name><affiliation wicri:level="1"><nlm:aff id="Aff6"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 0435 165X</institution-id><institution-id institution-id-type="GRID">grid.16872.3a</institution-id><institution>Department of Epidemiology and Biostatistics,</institution><institution>Amsterdam Rheumatology and Immunology Center, VU University Medical Center,</institution></institution-wrap>Amsterdam, The Netherlands</nlm:aff><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Amsterdam</wicri:regionArea></affiliation></author><author><name sortKey="Brooks, Peter" sort="Brooks, Peter" uniqKey="Brooks P" first="Peter" last="Brooks">Peter Brooks</name><affiliation><nlm:aff id="Aff7"><institution-wrap><institution-id institution-id-type="ISNI">0000 0001 2179 088X</institution-id><institution-id institution-id-type="GRID">grid.1008.9</institution-id><institution>Centre for Health Policy School of Population and Global Health,</institution><institution>University of Melbourne,</institution></institution-wrap>Melbourne, VIC Australia</nlm:aff><wicri:noCountry code="subfield">VIC Australia</wicri:noCountry></affiliation></author><author><name sortKey="Collins, Sarah" sort="Collins, Sarah" uniqKey="Collins S" first="Sarah" last="Collins">Sarah Collins</name><affiliation wicri:level="3"><nlm:aff id="Aff8">OMERACT Patient Research Partner, London, UK</nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>OMERACT Patient Research Partner, London</wicri:regionArea><placeName><settlement type="city">Londres</settlement><region type="country">Angleterre</region><region type="région" nuts="1">Grand Londres</region></placeName></affiliation></author><author><name sortKey="Conaghan, Philip G" sort="Conaghan, Philip G" uniqKey="Conaghan P" first="Philip G." last="Conaghan">Philip G. Conaghan</name><affiliation wicri:level="1"><nlm:aff id="Aff9"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 1936 8403</institution-id><institution-id institution-id-type="GRID">grid.9909.9</institution-id><institution>NIHR Leeds Musculoskeletal Biomedical Research Unit, Leeds Institute of Rheumatic and Musculoskeletal Medicine,</institution><institution>University of Leeds,</institution></institution-wrap>Leeds, UK</nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Leeds</wicri:regionArea></affiliation></author><author><name sortKey="D Gostino, Maria Antonietta" sort="D Gostino, Maria Antonietta" uniqKey="D Gostino M" first="Maria-Antonietta" last="D Gostino">Maria-Antonietta D Gostino</name><affiliation wicri:level="1"><nlm:aff id="Aff10"><institution-wrap><institution-id institution-id-type="ISNI">0000 0000 9982 5352</institution-id><institution-id institution-id-type="GRID">grid.413756.2</institution-id><institution>Department of Rheumatology,</institution><institution>Hôpital Ambroise Paré, APHP, Université Versailles Saint Quentin en Yvelines,</institution></institution-wrap>Boulogne-Billancourt, France</nlm:aff><country xml:lang="fr">France</country><wicri:regionArea>Boulogne-Billancourt</wicri:regionArea></affiliation></author><author><name sortKey="Hofstetter, Cathie" sort="Hofstetter, Cathie" uniqKey="Hofstetter C" first="Cathie" last="Hofstetter">Cathie Hofstetter</name><affiliation><nlm:aff id="Aff11">OMERACT Patient Research Partner, Vancouver, BC Canada</nlm:aff><wicri:noCountry code="subfield">BC Canada</wicri:noCountry></affiliation></author><author><name sortKey="Hughes, Rod" sort="Hughes, Rod" uniqKey="Hughes R" first="Rod" last="Hughes">Rod Hughes</name><affiliation wicri:level="1"><nlm:aff id="Aff12">Ashford St Peter’s Foundation trust Hospital, Chertsey, Surrey, UK</nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Ashford St Peter’s Foundation trust Hospital, Chertsey, Surrey</wicri:regionArea><wicri:noRegion>Surrey</wicri:noRegion></affiliation></author><author><name sortKey="Leong, Amye" sort="Leong, Amye" uniqKey="Leong A" first="Amye" last="Leong">Amye Leong</name><affiliation wicri:level="2"><nlm:aff id="Aff13">OMERACT Patient Research Partner, Santa Barbara, CA USA</nlm:aff><country>États-Unis</country><placeName><region type="state">Californie</region></placeName><wicri:cityArea>OMERACT Patient Research Partner, Santa Barbara</wicri:cityArea></affiliation><affiliation wicri:level="2"><nlm:aff id="Aff14">Healthy Motivations, Santa Barbara, CA 93108 USA</nlm:aff><country xml:lang="fr">États-Unis</country><placeName><region type="state">Californie</region></placeName><wicri:cityArea>Healthy Motivations, Santa Barbara</wicri:cityArea></affiliation><affiliation><nlm:aff id="Aff15">Bone and Joint Decade, The Global Alliance for Musculoskeletal Health, Truro, Cornwall UK</nlm:aff><wicri:noCountry code="subfield">Cornwall UK</wicri:noCountry></affiliation></author><author><name sortKey="Lyddiatt, Ann" sort="Lyddiatt, Ann" uniqKey="Lyddiatt A" first="Ann" last="Lyddiatt">Ann Lyddiatt</name><affiliation><nlm:aff id="Aff11">OMERACT Patient Research Partner, Vancouver, BC Canada</nlm:aff><wicri:noCountry code="subfield">BC Canada</wicri:noCountry></affiliation></author><author><name sortKey="March, Lyn" sort="March, Lyn" uniqKey="March L" first="Lyn" last="March">Lyn March</name><affiliation wicri:level="2"><nlm:aff id="Aff16"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 1936 834X</institution-id><institution-id institution-id-type="GRID">grid.1013.3</institution-id><institution>Institute of Bone and Joint Research,</institution><institution>Sydney Medical School and School of Public Health, University of Sydney,</institution></institution-wrap>Sydney, NSW Australia</nlm:aff><country>Australie</country><placeName><region type="state">Nouvelle-Galles du Sud</region></placeName><wicri:cityArea>Sydney</wicri:cityArea></affiliation><affiliation wicri:level="2"><nlm:aff id="Aff17">Department of Rheumatology, Royal North Shore, St. Leonards, NSW Australia</nlm:aff><country>Australie</country><placeName><region type="state">Nouvelle-Galles du Sud</region></placeName><wicri:cityArea>Department of Rheumatology, Royal North Shore, St. Leonards</wicri:cityArea></affiliation></author><author><name sortKey="May, James" sort="May, James" uniqKey="May J" first="James" last="May">James May</name><affiliation wicri:level="2"><nlm:aff id="Aff18">OMERACT Patient Research Partner, Seattle, WA USA</nlm:aff><country>États-Unis</country><placeName><region type="state">Washington (État)</region></placeName><wicri:cityArea>OMERACT Patient Research Partner, Seattle</wicri:cityArea></affiliation></author><author><name sortKey="Montie, Pamela" sort="Montie, Pamela" uniqKey="Montie P" first="Pamela" last="Montie">Pamela Montie</name><affiliation><nlm:aff id="Aff11">OMERACT Patient Research Partner, Vancouver, BC Canada</nlm:aff><wicri:noCountry code="subfield">BC Canada</wicri:noCountry></affiliation><affiliation><nlm:aff id="Aff19"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 0462 6801</institution-id><institution-id institution-id-type="GRID">grid.418127.9</institution-id><institution></institution><institution>Arthritis Patient Advisory Board, Arthritis Research Centre Canada,</institution></institution-wrap>Richmond, BC Canada</nlm:aff><wicri:noCountry code="subfield">BC Canada</wicri:noCountry></affiliation></author><author><name sortKey="Richards, Pamela" sort="Richards, Pamela" uniqKey="Richards P" first="Pamela" last="Richards">Pamela Richards</name><affiliation><nlm:aff id="Aff3"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 1936 7603</institution-id><institution-id institution-id-type="GRID">grid.5337.2</institution-id><institution>Academic Rheumatology Unit, Bristol Royal Infirmary,</institution><institution>University of Bristol,</institution></institution-wrap>Bristol, BS2 8HW UK</nlm:aff><wicri:noCountry code="subfield">BS2 8HW UK</wicri:noCountry></affiliation><affiliation wicri:level="1"><nlm:aff id="Aff20">OMERACT Patient Research Partner, Bristol, UK</nlm:aff><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>OMERACT Patient Research Partner, Bristol</wicri:regionArea><wicri:noRegion>Bristol</wicri:noRegion></affiliation></author><author><name sortKey="Simon, Lee S" sort="Simon, Lee S" uniqKey="Simon L" first="Lee S." last="Simon">Lee S. Simon</name><affiliation wicri:level="2"><nlm:aff id="Aff21">SDG LLC, Cambridge, MA 02139 USA</nlm:aff><country xml:lang="fr">États-Unis</country><placeName><region type="state">Massachusetts</region></placeName><wicri:cityArea>SDG LLC, Cambridge</wicri:cityArea></affiliation></author><author><name sortKey="Singh, Jasvinder A" sort="Singh, Jasvinder A" uniqKey="Singh J" first="Jasvinder A." last="Singh">Jasvinder A. Singh</name><affiliation wicri:level="2"><nlm:aff id="Aff22"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 0419 1326</institution-id><institution-id institution-id-type="GRID">grid.280808.a</institution-id><institution></institution><institution>Medicine Service, VA Medical Center,</institution></institution-wrap>Birmingham, AL USA</nlm:aff><country>États-Unis</country><placeName><region type="state">Alabama</region></placeName><wicri:cityArea>Birmingham</wicri:cityArea></affiliation><affiliation wicri:level="2"><nlm:aff id="Aff23"><institution-wrap><institution-id institution-id-type="ISNI">0000000106344187</institution-id><institution-id institution-id-type="GRID">grid.265892.2</institution-id><institution>Division of Epidemiology at School of Public Health, Department of Medicine at School of Medicine,</institution><institution>University of Alabama,</institution></institution-wrap>Birmingham, AL 35294-0022 USA</nlm:aff><country xml:lang="fr">États-Unis</country><placeName><region type="state">Alabama</region></placeName><wicri:cityArea>Birmingham</wicri:cityArea></affiliation><affiliation wicri:level="2"><nlm:aff id="Aff24"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 0459 167X</institution-id><institution-id institution-id-type="GRID">grid.66875.3a</institution-id><institution>Department of Orthopedic Surgery,</institution><institution>Mayo Clinic College of Medicine,</institution></institution-wrap>Rochester, MN 55905 USA</nlm:aff><country xml:lang="fr">États-Unis</country><placeName><region type="state">Minnesota</region></placeName><wicri:cityArea>Rochester</wicri:cityArea></affiliation></author><author><name sortKey="Strand, Vibeke" sort="Strand, Vibeke" uniqKey="Strand V" first="Vibeke" last="Strand">Vibeke Strand</name><affiliation wicri:level="2"><nlm:aff id="Aff25"><institution-wrap><institution-id institution-id-type="ISNI">0000000419368956</institution-id><institution-id institution-id-type="GRID">grid.168010.e</institution-id><institution>Division Immunology/Rheumatology,</institution><institution>Stanford University School of Medicine,</institution></institution-wrap>Palo Alto, CA USA</nlm:aff><country>États-Unis</country><placeName><region type="state">Californie</region></placeName><wicri:cityArea>Palo Alto</wicri:cityArea></affiliation></author><author><name sortKey="Voshaar, Marieke" sort="Voshaar, Marieke" uniqKey="Voshaar M" first="Marieke" last="Voshaar">Marieke Voshaar</name><affiliation wicri:level="3"><nlm:aff id="Aff1">OMERACT Patient Research Partner, Amsterdam, The Netherlands</nlm:aff><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>OMERACT Patient Research Partner, Amsterdam</wicri:regionArea><placeName><settlement type="city">Amsterdam</settlement><region nuts="2" type="province">Hollande-Septentrionale</region></placeName></affiliation><affiliation wicri:level="1"><nlm:aff id="Aff26"><institution-wrap><institution-id institution-id-type="ISNI">0000 0004 0399 8953</institution-id><institution-id institution-id-type="GRID">grid.6214.1</institution-id><institution>Department of Psychology, Health and Technology,</institution><institution>University of Twente,</institution></institution-wrap>Enschede, The Netherlands</nlm:aff><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Enschede</wicri:regionArea></affiliation></author><author><name sortKey="Bingham, Clifton O" sort="Bingham, Clifton O" uniqKey="Bingham C" first="Clifton O." last="Bingham">Clifton O. Bingham</name><affiliation wicri:level="2"><nlm:aff id="Aff27"><institution-wrap><institution-id institution-id-type="ISNI">0000 0001 2171 9311</institution-id><institution-id institution-id-type="GRID">grid.21107.35</institution-id><institution>Division of Rheumatology,</institution><institution>Johns Hopkins University,</institution></institution-wrap>Baltimore, MD USA</nlm:aff><country>États-Unis</country><placeName><region type="state">Maryland</region></placeName><wicri:cityArea>Baltimore</wicri:cityArea></affiliation></author><author><name sortKey="Gossec, Laure" sort="Gossec, Laure" uniqKey="Gossec L" first="Laure" last="Gossec">Laure Gossec</name><affiliation wicri:level="1"><nlm:aff id="Aff28"><institution-wrap><institution-id institution-id-type="ISNI">0000 0001 1955 3500</institution-id><institution-id institution-id-type="GRID">grid.5805.8</institution-id><institution>Institut Pierre Louis d’Epidémiologie et de Santé Publique,</institution><institution>Sorbonne Universités, UPMC Univ Paris 06, GRC-08,</institution></institution-wrap>Paris, France</nlm:aff><country xml:lang="fr">France</country><wicri:regionArea>Paris</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="Aff29"><institution-wrap><institution-id institution-id-type="ISNI">0000 0001 2150 9058</institution-id><institution-id institution-id-type="GRID">grid.411439.a</institution-id><institution>Rheumatology Department,</institution><institution>Pitie-Salpétrière Hospital, AP-HP,</institution></institution-wrap>Paris, France</nlm:aff><country xml:lang="fr">France</country><wicri:regionArea>Paris</wicri:regionArea></affiliation></author></analytic><series><title level="j">The Patient</title><idno type="ISSN">1178-1653</idno><idno type="eISSN">1178-1661</idno><imprint><date when="2016">2016</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p>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. 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Bingham</name><name sortKey="Leong, Amye" sort="Leong, Amye" uniqKey="Leong A" first="Amye" last="Leong">Amye Leong</name><name sortKey="May, James" sort="May, James" uniqKey="May J" first="James" last="May">James May</name><name sortKey="Simon, Lee S" sort="Simon, Lee S" uniqKey="Simon L" first="Lee S." last="Simon">Lee S. Simon</name><name sortKey="Singh, Jasvinder A" sort="Singh, Jasvinder A" uniqKey="Singh J" first="Jasvinder A." last="Singh">Jasvinder A. Singh</name><name sortKey="Singh, Jasvinder A" sort="Singh, Jasvinder A" uniqKey="Singh J" first="Jasvinder A." last="Singh">Jasvinder A. Singh</name><name sortKey="Singh, Jasvinder A" sort="Singh, Jasvinder A" uniqKey="Singh J" first="Jasvinder A." last="Singh">Jasvinder A. Singh</name><name sortKey="Strand, Vibeke" sort="Strand, Vibeke" uniqKey="Strand V" first="Vibeke" last="Strand">Vibeke Strand</name></country><country name="Australie"><region name="Nouvelle-Galles du Sud"><name sortKey="March, Lyn" sort="March, Lyn" uniqKey="March L" first="Lyn" last="March">Lyn March</name></region><name sortKey="March, Lyn" sort="March, Lyn" uniqKey="March L" first="Lyn" last="March">Lyn March</name></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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