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Collaborative user involvement in health research agenda setting
Nierse, C.J.
2019
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citation for published version (APA)
Nierse, C. J. (2019). Collaborative user involvement in health research agenda setting.
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Members of the reading committee:
Dr. Petra Verdonk
Prof.dr. Baziel van Engelen
Prof.dr. Gaby Jacobs
Prof.dr. Målfrid Råheim
Prof.dr. Adelita Ranchor
Dr. Alice Schippers
Paranimfen:
Drs. Marleen Joosen
Marloes van der Laan, M.Sc., MBA
ISBN: 978-94-6375-672-3
Published by: Ridderprint, Alblasserdam Cover
photo by: Shutterstock
Print: Ridderprint, www.ridderprint.nl
VRIJE UNIVERSITEIT
Collaborative user involvement in health research agenda
setting
ACADEMISCH PROEFSCHRIFT
ter verkrijging van de graad Doctor aan
de Vrije Universiteit Amsterdam,
op gezag van de rector magnificus
prof.dr. V. Subramaniam,
in het openbaar te verdedigen
ten overstaan van de promotiecommissie
van de Faculteit der Geneeskunde
op 2 december 2019 om 11.45 uur
in de aula van de universiteit,
De Boelelaan 1105
door
Christi Jacolien Nierse
geboren te Breda
promotor:
copromotor:
prof.dr. T.A. Abma
prof.dr. G.A.M. Widdershoven
C
ONTENT
1 INTRODUCTION ... 5
1.1 DEVELOPMENTS IN PATIENT, PHYSICIAN AND RESEARCHER RELATIONSHIPS ...7
1.2 DEVELOPMENTS IN THE NETHERLANDS ...9
1.3 THE CONCEPTS OF USERS, RESEARCH PARTNERS, AND ACADEMIC RESEARCHERS ...12
1.4 APPROACHES FOR USER INVOLVEMENT IN RESEARCH AGENDA SETTING ...13
1.5 THIS DISSERTATION ...22
1.6 METHODOLOGY ...22
1.7 THREE CASE STUDIES ON COLLABORATION IN RESEARCH AGENDA SETTING ...24
2 PATIENTS AS PARTNERS IN RESPONSIVE RESEARCH. METHODOLOGICAL NOTIONS FOR COLLABORATION IN MIXED RESEARCH TEAMS. ... 37
2.1 INTRODUCTION ...39
2.2 FROM OBJECT TO RESEARCH PARTNER ...40
2.3 RESPONSIVE RESEARCH ...44
2.4 CASE EXAMPLES ...48
2.5 METHODOLOGICAL NOTIONS FOR MIXED TEAMS ...53
2.6 DISCUSSION AND CONCLUSION ...65
3 COLLABORATION AND CO-OWNERSHIP IN RESEARCH: DYNAMICS AND DIALOGUES BETWEEN PATIENT RESEARCH PARTNERS AND PROFESSIONAL RESEARCHERS IN A RESEARCH TEAM. ... 73
3.1 INTRODUCTION: CONSULTATION, CONTROL AND COLLABORATION ...75
3.2 CASE STUDY: AN AGENDA FOR SOCIAL–SCIENTIfiC RESEARCH ON CHRONIC KIDNEY DISEASE ...77
3.3 RESPONSIVE RESEARCH ...78
3.4 PREPARATIONS WITHIN THE RESEARCH TEAM ...82
3.5 PAIRED INTERVIEWING ...85
3.6 CO-ANALYSIS AND CO-WRITING ...87
3.7 DISCUSSION AND CONCLUSION ...89
4 DEVELOPING VOICE AND EMPOWERMENT: THE FIRST STEP TOWARDS A BROAD CONSULTATION IN RESEARCH AGENDA SETTING. ... 101
4.1 INTRODUCTION ... 103
4.2 METHOD ... 105
4.3 RESULTS ... 109
4.4 DISCUSSION ... 116
5 RESEARCH PRIORITIES OF PATIENTS WITH NEUROMUSCULAR DISEASE. ... 125
5.1 INTRODUCTION ... 127
5.2 METHODS... 128
5.3 RESULTS ... 133
5.4 DISCUSSION ... 141
