Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences

OBJECTIVE: To assess the inclusion of patients as international research partners in Outcome Measures in Rheumatology (OMERACT) conferences and how this has influenced the scope and conduct of outcomes research in rheumatology. DESIGN: A thematic content analysis of OMERACT internal documents, publi...

Descripción completa

Detalles Bibliográficos
Autores principales: de Wit, Maarten, Abma, Tineke, Koelewijn-van Loon, Marije, Collins, Sarah, Kirwan, John
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2013
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3651970/
https://www.ncbi.nlm.nih.gov/pubmed/23667160
http://dx.doi.org/10.1136/bmjopen-2012-002241
_version_ 1782269254463127552
author de Wit, Maarten
Abma, Tineke
Koelewijn-van Loon, Marije
Collins, Sarah
Kirwan, John
author_facet de Wit, Maarten
Abma, Tineke
Koelewijn-van Loon, Marije
Collins, Sarah
Kirwan, John
author_sort de Wit, Maarten
collection PubMed
description OBJECTIVE: To assess the inclusion of patients as international research partners in Outcome Measures in Rheumatology (OMERACT) conferences and how this has influenced the scope and conduct of outcomes research in rheumatology. DESIGN: A thematic content analysis of OMERACT internal documents, publications and conference proceedings, followed by a responsive evaluation including 32 qualitative semistructured interviews. SETTING: The international, biannual research conference OMERACT 10 (Malaysia, 2010). PARTICIPANTS: Senior researchers (n=10), junior researchers (n=2), representatives of the pharmaceutical industry and regulators (n=2), conference staff (n=2), new patient delegates (n=8) and experienced patient delegates (n=8). RESULTS: The role of patients evolved over 10 years from a single patient focus group to full participation in all areas of the meeting and inclusion in research group meetings between conferences. Five main categories of impact emerged: widening the research agenda; including patient relevant outcomes in core sets; enhancing patient reported instruments; changing the culture of OMERACT and consequences outside OMERACT. Patient participants identified previously neglected outcome domains such as fatigue, sleep disturbances and flares which prompted collaborative working on new programmes of research. Specific benefits and challenges for patients and professionals were identified, such as personal fulfilment, widening of research interests, difficulties in establishing equal partnerships and concerns about loss of research rigour. CONCLUSIONS: Including patients as partners in OMERACT conferences has widened its focus and adjusted the way of working. It has resulted in new developments in the research agenda and the use of more patient-relevant outcomes in clinical trials. These collaborations have influenced perceptions and beliefs among many patients and researchers, and led to wider patient involvement as partners in research.
format Online
Article
Text
id pubmed-3651970
institution National Center for Biotechnology Information
language English
publishDate 2013
publisher BMJ Publishing Group
record_format MEDLINE/PubMed
spelling pubmed-36519702013-05-14 Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences de Wit, Maarten Abma, Tineke Koelewijn-van Loon, Marije Collins, Sarah Kirwan, John BMJ Open Rheumatology OBJECTIVE: To assess the inclusion of patients as international research partners in Outcome Measures in Rheumatology (OMERACT) conferences and how this has influenced the scope and conduct of outcomes research in rheumatology. DESIGN: A thematic content analysis of OMERACT internal documents, publications and conference proceedings, followed by a responsive evaluation including 32 qualitative semistructured interviews. SETTING: The international, biannual research conference OMERACT 10 (Malaysia, 2010). PARTICIPANTS: Senior researchers (n=10), junior researchers (n=2), representatives of the pharmaceutical industry and regulators (n=2), conference staff (n=2), new patient delegates (n=8) and experienced patient delegates (n=8). RESULTS: The role of patients evolved over 10 years from a single patient focus group to full participation in all areas of the meeting and inclusion in research group meetings between conferences. Five main categories of impact emerged: widening the research agenda; including patient relevant outcomes in core sets; enhancing patient reported instruments; changing the culture of OMERACT and consequences outside OMERACT. Patient participants identified previously neglected outcome domains such as fatigue, sleep disturbances and flares which prompted collaborative working on new programmes of research. Specific benefits and challenges for patients and professionals were identified, such as personal fulfilment, widening of research interests, difficulties in establishing equal partnerships and concerns about loss of research rigour. CONCLUSIONS: Including patients as partners in OMERACT conferences has widened its focus and adjusted the way of working. It has resulted in new developments in the research agenda and the use of more patient-relevant outcomes in clinical trials. These collaborations have influenced perceptions and beliefs among many patients and researchers, and led to wider patient involvement as partners in research. BMJ Publishing Group 2013-05-09 /pmc/articles/PMC3651970/ /pubmed/23667160 http://dx.doi.org/10.1136/bmjopen-2012-002241 Text en Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/3.0/ and http://creativecommons.org/licenses/by-nc/3.0/legalcode
spellingShingle Rheumatology
de Wit, Maarten
Abma, Tineke
Koelewijn-van Loon, Marije
Collins, Sarah
Kirwan, John
Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences
title Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences
title_full Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences
title_fullStr Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences
title_full_unstemmed Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences
title_short Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences
title_sort involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international omeract conferences
topic Rheumatology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3651970/
https://www.ncbi.nlm.nih.gov/pubmed/23667160
http://dx.doi.org/10.1136/bmjopen-2012-002241
work_keys_str_mv AT dewitmaarten involvingpatientresearchpartnershasasignificantimpactonoutcomesresearcharesponsiveevaluationoftheinternationalomeractconferences
AT abmatineke involvingpatientresearchpartnershasasignificantimpactonoutcomesresearcharesponsiveevaluationoftheinternationalomeractconferences
AT koelewijnvanloonmarije involvingpatientresearchpartnershasasignificantimpactonoutcomesresearcharesponsiveevaluationoftheinternationalomeractconferences
AT collinssarah involvingpatientresearchpartnershasasignificantimpactonoutcomesresearcharesponsiveevaluationoftheinternationalomeractconferences
AT kirwanjohn involvingpatientresearchpartnershasasignificantimpactonoutcomesresearcharesponsiveevaluationoftheinternationalomeractconferences