Department of Health Technology and Services Research, Technical Medical Center, Faculty of Behavioural, Management and Social Sciences (BMS), University of Twente, Technohal, Room 3304, P.O. Box 217, 7500 AE, Enschede, The Netherlands.
The Daffodil Centre, The University of Sydney, a Joint Venture with Cancer Council NSW, Sydney, Australia.
Patient. 2024 Jan;17(1):3-12. doi: 10.1007/s40271-023-00649-4. Epub 2023 Oct 24.
Health preference research (HPR) is being increasingly conducted to better understand patient preferences for medical decisions. However, patients vary in their desire to play an active role in medical decisions. Until now, few studies have considered patients' preferred roles in decision making. In this opinion paper, we advocate for HPR researchers to assess and account for role preferences in their studies, to increase the relevance of their work for medical and shared decision making. We provide recommendations on how role preferences can be elicited and integrated with health preferences: (1) in formative research prior to a health preference study that aims to inform medical decisions or decision makers, (2a) in the development of health preference instruments, for instance by incorporating a role preference instrument and (2b) by clarifying the respondent's role in the decision prior to the preference elicitation task or by including role preferences as an attribute in the task itself, and (3) in statistical analysis by including random parameters or latent classes to raise awareness of heterogeneity in role preferences and how it relates to health preferences. Finally, we suggest redefining the decision process as a model that integrates the role and health preferences of the different parties that are involved. We believe that the field of HPR would benefit from learning more about the extent to which role preferences relate to health preferences, within the context of medical and shared decision making.
健康偏好研究（HPR）越来越多地被用于更好地了解患者对医疗决策的偏好。然而，患者在积极参与医疗决策方面的意愿存在差异。到目前为止，很少有研究考虑过患者在决策中的偏好角色。在本观点文中，我们主张 HPR 研究人员在研究中评估和考虑角色偏好，以提高其工作在医疗和共同决策中的相关性。我们提供了一些建议，说明如何在以下方面引出和整合健康偏好和角色偏好：（1）在旨在为医疗决策或决策者提供信息的健康偏好研究的形成性研究之前；（2a）在健康偏好工具的开发中，例如通过纳入角色偏好工具，以及（2b）在偏好 elicitation 任务之前明确受访者在决策中的角色，或者将角色偏好作为任务本身的一个属性；（3）在统计分析中，通过纳入随机参数或潜在类别，以提高对角色偏好异质性及其与健康偏好关系的认识。最后，我们建议重新定义决策过程，将其作为一个模型，整合参与决策的不同方的角色和健康偏好。我们认为，HPR 领域将受益于更多地了解角色偏好与健康偏好之间的关系，尤其是在医疗和共同决策的背景下。
