Amyloidosis Speakers Bureau (ASB) Exploring Patient Narratives Dataset
This dataset comprises research data from a study investigating the impact of amyloidosis patient narratives on medical students' information-seeking behavior. It includes two components: survey data from U.S. medical students (N=1,634) to assess changes in their knowledge, attitudes, and behaviors after exposure to patient stories, and health information mailings (N=50) containing narratives from amyloidosis patients about their diagnostic and treatment journeys. The data were collected through the Amyloidosis Speakers Bureau (ASB) program, which arranges for patients to share their experiences with medical students. The dataset is primarily used to examine the role of patient narratives in medical education, exploring their positive effects on students' disease awareness, empathy, and information-seeking behavior, thereby providing empirical evidence for improving rare disease education and patient-physician communication.
基本信息
About
This dataset comprises research data from a study investigating the impact of amyloidosis patient narratives on medical students' information-seeking behavior. It includes two components: survey data from U.S. medical students (N=1,634) to assess changes in their knowledge, attitudes, and behaviors after exposure to patient stories, and health information mailings (N=50) containing narratives from amyloidosis patients about their diagnostic and treatment journeys. The data were collected through the Amyloidosis Speakers Bureau (ASB) program, which arranges for patients to share their experiences with medical students. The dataset is primarily used to examine the role of patient narratives in medical education, exploring their positive effects on students' disease awareness, empathy, and information-seeking behavior, thereby providing empirical evidence for improving rare disease education and patient-physician communication.
https://search.dataone.org/view/sha256:c97fc8e6c9c260d6287d83e6107ef2f021358dad6faded9c70fca97cfd156931
下载信息
注册下载
Tips: 该数据集需要在对应的数据源网站注册通过后，才能进行数据下载，注册有对应要求，或者需要收费。
Unavailable公开下载
Tips: 该数据集属于公开下载，应该可以免费公开下载。
Unavailable有偿下载
Tips: 该数据集 Qianfanghub 可以协助提供有偿下载服务，注意，服务不针对数据相关产权，只是技术服务费。
提供高速下载与技术交付服务（收技术服务费，非数据销售）
Unavailable千方医数集，医疗数据集部分，是为社区服务的公开医疗数据集搜索引擎，并不存储或者下载原始的任何数据。 如果您有其他医疗数据需求，可以和客服联系，或者下工单。我们有强大的三甲医疗机构帮助您提供个性化的医疗数据定制、采集、标注服务。
使用方式
数据集获取
标准获取流程：
- 访问源站链接，注册/登录账号；
- 进入数据集详情页，按页面指引申请权限或直接下载；
- 部分平台提供 SDK，例如：
- OpenDataLab:
pip install openxlab后openxlab.dataset.get(...) - ModelScope:
pip install modelscope后modelscope download - 天池: 登录后页面提供直链下载
以源站「数据下载/使用文档」页面为准。
- OpenDataLab:
数据说明
该数据集包含一项关于淀粉样变性患者叙述对医学生信息寻求行为影响的研究数据。数据集由两部分组成：一是针对美国医学生（N=1,634）的问卷调查数据，用于评估医学生在接触患者叙述前后的知识、态度和行为变化；二是淀粉样变性患者健康信息邮件资料（N=50），这些资料记录了患者分享的诊断与治疗经历。数据通过淀粉样变性演讲者局（ASB）项目收集，该项目组织淀粉样变性患者向医学生讲述其诊疗历程。该数据集主要用于研究患者叙事在医学教育中的作用，探索其对医学生疾病认知、同理心及信息寻求行为的积极影响，为改善罕见病教育和医患沟通提供实证依据。
Accuracy bottleneck? Data gaps?
Current open data not meeting your algorithm needs? We provide high-quality, multimodal real-world clinical data customized for Cardiac amyloidosis.
