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“If I Wasn’t This Robust”: Patients’ Expectations and Experiences at the Outcome Measures in Rheumatology Conference 2010

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Abstract

Background

Patients are incidentally involved in scientific conferences as collaborating partners. Little is known about how they engage with researchers.

Objective

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.

Study Design

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.

Results

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.

Conclusions

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.

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Acknowledgments

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.

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Authors and Affiliations

  1. Department of Medical Humanities, VU Medical Centre, Van der Boechorststraat 7, 1081 BT, Amsterdam, The Netherlands

    Maarten P. T. de Wit & Tineke A. Abma

  2. Department of General Practice, CAPHRI School for Public Health and Primary Care, Maastricht University Medical Centre, Maastricht, The Netherlands

    Marije S. Koelewijn-van Loon

  3. Patient Research Partner, Surrey, UK

    Sarah Collins

  4. School of Clinical Sciences, University of Bristol, Bristol, UK

    John Kirwan

  5. Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK

    John Kirwan

Authors
  1. Maarten P. T. de Wit
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  2. Marije S. Koelewijn-van Loon
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  3. Sarah Collins
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  4. Tineke A. Abma
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  5. John Kirwan
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Corresponding author

Correspondence to Maarten P. T. de Wit.

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de Wit, M.P.T., Koelewijn-van Loon, M.S., Collins, S. et al. “If I Wasn’t This Robust”: Patients’ Expectations and Experiences at the Outcome Measures in Rheumatology Conference 2010. Patient 6, 179–187 (2013). https://doi.org/10.1007/s40271-013-0017-0

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