Designing Discrete Choice Experiments Using a Patient-Oriented Approach
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PRACTICAL APPLICATION
Designing Discrete Choice Experiments Using a Patient‑Oriented Approach Magda Aguiar1 · Mark Harrison1,2,3 · Sarah Munro2,4 · Tiasha Burch5 · K. Julia Kaal1,6 · Marie Hudson7 · Nick Bansback2,3,6 · Tracey‑Lea Laba8
© Springer Nature Switzerland AG 2020
Abstract Patient-oriented research is a process whereby patients or caregivers are included as research partners so that research focusses on topics that are priorities and lead to findings that translate into practice. Using a case study of preferences for stem cell transplant in scleroderma, we report on a patient-oriented research approach to developing a discrete choice experiment. Our patient-oriented research application followed the four guiding principles in Canada’s Strategy for Patient-Oriented Research: inclusiveness, support, mutual respect and co-build. In this case study, patient partners were involved at different levels of engagement to match individual availability, skillset and roles in the team. They advised, to different degrees, on all aspects of the study from design to analyses. Using a patient-oriented research approach led to the inclusion of attributes that would likely have been excluded (e.g. support from a multidisciplinary team), and realistic framing of patient-relevant and sometimes sensitive attributes (e.g. mortality and cost). Meeting locations and times were adjusted to accommodate all-team circumstances. Institutional constraints on the reimbursement for patient partners influenced the timing and extent of involvement. We found that adopting a patient-oriented research approach to discrete choice experiment design injected unique knowledge and expertise into the team, improved the representativeness of the sample recruited, minimised researcher biases, and ensured appropriate attribute selection and descriptions. The patient-oriented research approach highlighted some constraints of discrete choice experiment designs and, while not a solution, might ensure the methodological trade-offs remain patient relevant. Institutional challenges must be addressed to progress patient-oriented health economics research.
* Magda Aguiar [email protected] 1
Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, University of British Columbia, 4625‑2405 Wesbrook Mall, Vancouver, BC V6T 1Z3, Canada
2
Centre for Healthcare Evaluation and Outcome Sciences, Vancouver, BC, Canada
3
Arthritis Research Canada, Richmond, BC, Canada
4
Department of Obstetrics and Gynaecology, University of British Columbia, Vancouver, BC, Canada
5
Scleroderma Association of British Columbia, North Vancouver, BC, Canada
6
School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada
7
Division of Experimental Medicine, Department of Medicine, McGill University, Montreal, QC, Canada
8
Centre for Health Economics Research and Evaluation, University Technology Sydney, Sydney, NSW, Australia
Key Points for Decision Makers Using a patient-oriented approach to
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