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数字健康的伦理、法律和社会影响:来自行为医学学会的需求评估,以告知行为科学家的能力建设。

Ethical, legal, and social implications of digital health: A needs assessment from the Society of Behavioral Medicine to inform capacity building for behavioral scientists.

机构信息

Department of Psychiatry and Human Behavior, Warren Alpert Medical School of Brown University & The Miriam Hospital/Weight Control and Diabetes Research Center, Providence, RI, USA.

Herbert Wertheim School of Public Health and Human Longevity Science, University of California, San Diego, San Diego, CA, USA.

出版信息

Transl Behav Med. 2024 Feb 23;14(3):189-196. doi: 10.1093/tbm/ibad076.

Abstract

The ethical, legal, and social implications (ELSIs) of digital health are important when researchers and practitioners are using technology to collect, process, or store personal health data. Evidence underscores a strong need for digital health ELSI training, yet little is known about the specific ELSI topic areas that researchers and practitioners would most benefit from learning. To identify ELSI educational needs, a needs assessment survey was administered to the members of the Society of Behavioral Medicine (SBM). We sought to identify areas of ELSI proficiency and training need, and also evaluate interest and expertise in ELSI topics by career level and prior ELSI training history. The 14-item survey distributed to SBM members utilized the Digital Health Checklist tool (see recode.health/tools) and included items drawn from the four-domain framework: data management, access and usability, privacy and risk to benefit assessment. Respondents (N = 66) were majority faculty (74.2%) from psychology or public health. Only 39.4% reported receiving "formal" ELSI training. ELSI topics of greatest interest included practices that supported participant engagement, and dissemination and implementation of digital tools beyond the research setting. Respondents were least experienced in managing "bystander" data, having discussions about ELSIs, and reviewing terms of service agreements and privacy policies with participants and patients. There is opportunity for formalized ELSI training across career levels. Findings serve as an evidence base for continuous and ongoing evaluation of ELSI training needs to support scientists in conducting ethical and impactful digital health research.

摘要

数字健康的伦理、法律和社会影响(ELSI)在研究人员和从业者使用技术收集、处理或存储个人健康数据时非常重要。有证据表明,数字健康 ELSI 培训的需求非常强烈,但对于研究人员和从业者最需要学习的特定 ELSI 主题领域,人们知之甚少。为了确定 ELSI 教育需求,我们向行为医学学会(SBM)的成员进行了一项需求评估调查。我们旨在确定 ELSI 熟练程度和培训需求领域,并通过职业水平和之前的 ELSI 培训历史评估对 ELSI 主题的兴趣和专业知识。分发给 SBM 成员的 14 项调查使用了数字健康清单工具(见 recode.health/tools),并包含了来自四个领域框架的数据管理、访问和可用性、隐私和风险到利益评估的项目。受访者(N=66)主要是来自心理学或公共卫生领域的教师(74.2%)。只有 39.4%的人报告接受过“正式”的 ELSI 培训。最感兴趣的 ELSI 主题包括支持参与者参与的实践,以及在研究环境之外传播和实施数字工具。受访者在管理“旁观者”数据、讨论 ELSI 问题以及与参与者和患者审查服务条款协议和隐私政策方面经验最少。在整个职业生涯中都有机会进行正式的 ELSI 培训。研究结果为持续和不断评估 ELSI 培训需求提供了证据基础,以支持科学家进行符合伦理道德和有影响力的数字健康研究。

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