Tampere University Hospital, Neurology, Tampere, Finland.
University of Eastern Finland, Kuopio Finland.
Stud Health Technol Inform. 2022 Jun 29;295:179-182. doi: 10.3233/SHTI220691.
The patient as an active participant in decision-making has become an important resource in health care. Shared decision-making (SDM) relies on the patient's easy access to reliable and evidence-based health care information as well as the availability of patient-generated data, such as values and preferences for the health care professional (HCP). The aim of the present pilot study was to evaluate what type of information people with multiple sclerosis (pwMS) use in the SDM process, and what are the sources of that information. A semi-structured web-based survey of SDM was conducted through the MS-society in Finland. The results are presented against the Ottawa Decision Support Framework. A total of 27 pwMS participated. We found that all the participants wished to be involved in the decision-making process, but that they seldom found the information provided by HCP to be helpful. Instead, they searched the internet and visited various conversation platforms in social media, such as Facebook groups, for additional information.
患者作为积极参与决策的一方，已成为医疗保健的重要资源。共同决策（SDM）依赖于患者能够轻松获得可靠的基于证据的医疗保健信息，以及患者生成的数据（如对医疗保健专业人员（HCP）的价值观和偏好）的可用性。本试点研究的目的是评估多发性硬化症（pwMS）患者在 SDM 过程中使用哪些类型的信息，以及这些信息的来源。通过芬兰的多发性硬化症协会，以半结构化的基于网络的方式对 SDM 进行了调查。结果是根据渥太华决策支持框架呈现的。共有 27 名 pwMS 参与了调查。我们发现，所有参与者都希望参与决策过程，但他们发现 HCP 提供的信息很少有帮助。相反，他们在互联网上搜索信息，并访问社交媒体上的各种对话平台，例如 Facebook 群组，以获取其他信息。
