Successful Stepwise Development of Patient Research Partnership

14 Years’ Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT)

Maarten de Wit, John R. Kirwan, Peter Tugwell, Dorcas Beaton, Maarten Boers, Peter Brooks, Sarah Collins, Philip G. Conaghan, Maria Antonietta D’Agostino, Cathie Hofstetter, Rod Hughes, Amye Leong, Ann Lyddiatt, Lyn March, James May, Pamela Montie, Pamela Richards, Lee S. Simon, Jasvinder A. Singh, Vibeke Strand & 3 others Marieke Voshaar, Clifton Bingham, Laure Gossec

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)1-12
Number of pages12
JournalPatient
DOIs
StateAccepted/In press - Oct 5 2016

Fingerprint

Rheumatology
Patient Participation
Outcome Assessment (Health Care)
Research
Consensus
Reproducibility of Results
Biomedical Research
Research Personnel
Delivery of Health Care
Health

ASJC Scopus subject areas

  • Nursing (miscellaneous)

Cite this

Successful Stepwise Development of Patient Research Partnership : 14 Years’ Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT). / de Wit, Maarten; Kirwan, John R.; Tugwell, Peter; Beaton, Dorcas; Boers, Maarten; Brooks, Peter; Collins, Sarah; Conaghan, Philip G.; D’Agostino, Maria Antonietta; Hofstetter, Cathie; Hughes, Rod; Leong, Amye; Lyddiatt, Ann; March, Lyn; May, James; Montie, Pamela; Richards, Pamela; Simon, Lee S.; Singh, Jasvinder A.; Strand, Vibeke; Voshaar, Marieke; Bingham, Clifton; Gossec, Laure.

In: Patient, 05.10.2016, p. 1-12.

Research output: Contribution to journalArticle

de Wit, M, Kirwan, JR, Tugwell, P, Beaton, D, Boers, M, Brooks, P, Collins, S, Conaghan, PG, D’Agostino, MA, Hofstetter, C, Hughes, R, Leong, A, Lyddiatt, A, March, L, May, J, Montie, P, Richards, P, Simon, LS, Singh, JA, Strand, V, Voshaar, M, Bingham, C & Gossec, L 2016, 'Successful Stepwise Development of Patient Research Partnership: 14 Years’ Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT)', Patient, pp. 1-12. https://doi.org/10.1007/s40271-016-0198-4
de Wit, Maarten ; Kirwan, John R. ; Tugwell, Peter ; Beaton, Dorcas ; Boers, Maarten ; Brooks, Peter ; Collins, Sarah ; Conaghan, Philip G. ; D’Agostino, Maria Antonietta ; Hofstetter, Cathie ; Hughes, Rod ; Leong, Amye ; Lyddiatt, Ann ; March, Lyn ; May, James ; Montie, Pamela ; Richards, Pamela ; Simon, Lee S. ; Singh, Jasvinder A. ; Strand, Vibeke ; Voshaar, Marieke ; Bingham, Clifton ; Gossec, Laure. / Successful Stepwise Development of Patient Research Partnership : 14 Years’ Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT). In: Patient. 2016 ; pp. 1-12.
@article{5ca112e220c240ee8912a59337d56e36,
title = "Successful Stepwise Development of Patient Research Partnership: 14 Years’ Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT)",
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.",
author = "{de Wit}, Maarten and Kirwan, {John R.} and Peter Tugwell and Dorcas Beaton and Maarten Boers and Peter Brooks and Sarah Collins and Conaghan, {Philip G.} and D’Agostino, {Maria Antonietta} and Cathie Hofstetter and Rod Hughes and Amye Leong and Ann Lyddiatt and Lyn March and James May and Pamela Montie and Pamela Richards and Simon, {Lee S.} and Singh, {Jasvinder A.} and Vibeke Strand and Marieke Voshaar and Clifton Bingham and Laure Gossec",
year = "2016",
month = "10",
day = "5",
doi = "10.1007/s40271-016-0198-4",
language = "English (US)",
pages = "1--12",
journal = "Patient",
issn = "1178-1653",
publisher = "Springer Science + Business Media",

}

TY - JOUR

T1 - Successful Stepwise Development of Patient Research Partnership

T2 - 14 Years’ Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT)

AU - de Wit, Maarten

AU - Kirwan, John R.

AU - Tugwell, Peter

AU - Beaton, Dorcas

AU - Boers, Maarten

AU - Brooks, Peter

AU - Collins, Sarah

AU - Conaghan, Philip G.

AU - D’Agostino, Maria Antonietta

AU - Hofstetter, Cathie

AU - Hughes, Rod

AU - Leong, Amye

AU - Lyddiatt, Ann

AU - March, Lyn

AU - May, James

AU - Montie, Pamela

AU - Richards, Pamela

AU - Simon, Lee S.

AU - Singh, Jasvinder A.

AU - Strand, Vibeke

AU - Voshaar, Marieke

AU - Bingham, Clifton

AU - Gossec, Laure

PY - 2016/10/5

Y1 - 2016/10/5

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=84990966889&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84990966889&partnerID=8YFLogxK

U2 - 10.1007/s40271-016-0198-4

DO - 10.1007/s40271-016-0198-4

M3 - Article

SP - 1

EP - 12

JO - Patient

JF - Patient

SN - 1178-1653

ER -