“If I Wasn’t This Robust”: Patients’ Expectations and Experiences at the Outcome Measures in Rheumatology Conference 2010
- 314 Downloads
Patients are incidentally involved in scientific conferences as collaborating partners. Little is known about how they engage with researchers.
The purpose of this study was to explore the expectations and experiences of new patients to better understand the specific features of collaborative research during conferences in its complexity.
After a thematic literature review, we conducted fourteen interviews with eight delegates: four men and four women with three rheumatic diseases and representing five countries. They participated for the first time in the biannual conference on Outcome Measures in Rheumatology (OMERACT) in 2010. Data were subjected to a thematic content analysis.
Before the conference, patient participants had felt privileged to be invited but felt insufficiently prepared and uncertain about what was expected from their participation. They had anticipated a learning experience and had hoped to be able to make a contribution. Most experienced the conference program as physically and mentally challenging, partially due to poor moderation or lack of individual support. They doubted their input had been beneficial. After the conference these patients also described their participation as having been a valuable, meaningful, and learning experience. Although they presumed that they had not been very productive, they expected their contribution would be more effective at future conferences.
Patient delegates attending a scientific conference need clear information about their role prior to the event. Personalized support and a facilitative moderation style during sessions are advantageous for maximizing valuable contributions. Participation leads to personal learning curves and various benefits.
KeywordsPatient Participation Scientific Conference Patient Participant Rheumatic Condition Thematic Content Analysis
The authors thank the eight patient research partners for their unconditional support and open participation during the conference and thereafter.
No sources of funding were received to conduct this study. MW received a EULAR/OMERACT bursary to attend OMERACT 10. MW, MK, SC, TA, and JK declared having no conflicts of interest.
MW, TA, and JK invented the design of the study; MW performed the interviews and drafted the initial manuscript; MW and MK independently coded the interview transcripts. All authors were involved in the analysis of the data and reviewed and commented on the article.
- 1.Kirwan J, Heiberg T, Hewlett S, Hughes R, Kvien T, Ahlmen M, et al. Outcomes from the patient perspective workshop at OMERACT 6. J Rheumatol (Consensus Development Conference Review). 2003;30(4):868–72.Google Scholar
- 5.de Wit MPT, Abma TA, Koelewijn-van Loon MS, Collins S, Kirwan JR. Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences. BMJ Open. 2013 (accepted).Google Scholar
- 8.van de Bovenkamp HM. The limits of patient power. Examining active citizenship in Dutch health care. Dissertation. Rotterdam: Erasmus University; 2010.Google Scholar
- 10.Schipper K. Patient participation and knowledge [thesis]. Amsterdam: VU University; 2011.Google Scholar
- 11.Wells G, Anderson J, Beaton D, Bellamy N, Boers M, Bombardier C, et al. Minimal clinically important difference module: summary, recommendations, and research agenda. J Rheumatol (Consensus Development Conference Review). 2001;28(2):452–4.Google Scholar
- 13.OMERACT. Policy on including the patient perspective in rheumatology outcomes assessment. Plus OMERACT executive comments—appendix 32006 (unpublished). Draft 2 as at 2 February 2006.Google Scholar
- 16.Stake RE. Standards-based and responsive evaluations. Thousand Oaks: Sage Publications; 2004.Google Scholar
- 17.Guba EG, Lincoln YS. Fourth generation evaluation. Beverly Hills: SAGE Publications; 1989.Google Scholar
- 20.de Wit MPT, Berlo SE, Aanerud GJ, Aletaha D, Bijlsma JW, Croucher L, et al. European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects. Ann Rheum Dis (Consensus Development Conference Research Support, Non-U.S. Gov’t). 2011;70(5):722–6.CrossRefGoogle Scholar
- 21.Barber R, Boote J, Parry G, Cooper C, Yeeles P. Evaluating the impact of public involvement on research. In: Cotterell P, Barnes M, editors. Critical perspectives on user involvement. Bristol: The Policy Press, University of Bristol; 2012. p. 217–23.Google Scholar
- 25.Richards P, de Wit MPT. OMERACT glossary; 2010. http://reuma.rediris.es/omeract/docs/OMERACT-Glossary.htm.
- 31.OMERACT. Guiding principles for patient research partner participation in OMERACT; 2011 [updated V1.0, 27 March 2011; cited 2012 October 18]. http://www.omeract.org/pdf/2011-03-27%20Agreed%20Patient%20Participation%20Policy.pdf.