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.
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We are grateful for the substantial contributions of Jennifer Beckett (referred to as JB throughout the manuscript) to the design and plan for acquisition of data, advice, and interpretation of pilot data through her role as patient partner on this project.
The preparation of this article was possible through the financial support from the BC SUPPORT Unit Health Economics and Simulation Modelling Methods Cluster, which is part of British Columbia’s Academic Health Science Network (Award number: HESM-001). The BC SUPPORT Unit receives funding from the Canadian Institutes of Health Research and the Michael Smith Foundation for Health Research.
Conflict of interest
Magda Aguiar is supported by a CIHR’s Health System Impact Postdoctoral Fellowship. Mark Harrison is supported by a Michael Smith Foundation for Health Research Scholar Award 2017 (#16813) and a Young Investigator Salary Award 2016 (until 2019) from The Arthritis Society (YIS-16-104). Mark Harrison held the UBC Professorship in Sustainable Health Care, which between 2014 and 2017 was funded by Amgen Canada, AstraZeneca Canada, Eli Lilly Canada, GlaxoSmithKline, Merck Canada, Novartis Pharmaceuticals Canada, Pfizer Canada, Boehringer Ingelheim (Canada), Hoffman-La Roche, LifeScan Canada and Lundbeck Canada. Sarah Munro is supported by a Michael Smith Foundation for Health Research Scholar Award in partnership with the Centre for Health Evaluation and Outcome Sciences 2019 (#18270). Tiasha Burch and Julia Kaal have no conflicts of interest that are directly relevant to the content of this article. Marie Hudson is funded by the Fonds de recherche du Québec-Santé. Nick Bansback is co-lead of the Health Economics and Simulation Modelling Methods cluster, part of the BC SUPPORT Unit that commissioned this work as part of their mandate to explore and develop new methods for patient-oriented research. Tracey-Lea Laba is supported by an NHMRC Early Career Postdoctoral fellowship (APP1110230).
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Aguiar, M., Harrison, M., Munro, S. et al. Designing Discrete Choice Experiments Using a Patient-Oriented Approach. Patient 14, 389–397 (2021). https://doi.org/10.1007/s40271-020-00431-w