Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, University of British Columbia, 4625-2405 Wesbrook Mall, Vancouver, BC, V6T 1Z3, Canada.
Centre for Healthcare Evaluation and Outcome Sciences, Vancouver, BC, Canada.
Patient. 2021 Jul;14(4):389-397. doi: 10.1007/s40271-020-00431-w.
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.
以患者为中心的研究是一个让患者或照护者作为研究伙伴参与的过程，以便研究关注的是优先事项的主题，并得出可转化为实践的研究结果。我们通过一项关于硬皮病患者对干细胞移植偏好的案例研究，报告了一种用于开发离散选择实验的以患者为中心的研究方法。我们的以患者为中心的研究应用遵循了加拿大以患者为中心的研究战略中的四项指导原则：包容性、支持、相互尊重和共同建设。在这个案例研究中，患者伙伴以不同程度的参与度参与其中，以匹配个人的可用性、技能组合和团队中的角色。他们在从设计到分析的各个方面都提供了不同程度的建议。采用以患者为中心的研究方法，使那些可能被排除在外的属性（例如来自多学科团队的支持）被纳入研究，并且对与患者相关的、有时甚至是敏感的属性（例如死亡率和成本）进行了现实的框定。会议地点和时间也进行了调整，以适应所有团队的情况。机构对患者伙伴报酬的限制影响了他们参与的时间和程度。我们发现，采用以患者为中心的研究方法来设计离散选择实验，为团队注入了独特的知识和专业技能，提高了招募样本的代表性，最大限度地减少了研究人员的偏见，并确保了适当的属性选择和描述。以患者为中心的研究方法突出了离散选择实验设计的一些限制，虽然不是解决方案，但可能确保方法学上的权衡仍然与患者相关。必须解决机构方面的挑战，以推进以患者为中心的健康经济学研究。
