Incorporating Community Partner Perspectives on eHealth Technology Data Sharing Practices for the California Early Psychosis Intervention Network: Qualitative Focus Group Study With a User-Centered Design Approach.
Incorporating Community Partner Perspectives on eHealth Technology Data Sharing Practices for the California Early Psychosis Intervention Network: Qualitative Focus Group Study With a User-Centered Design Approach.
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DOI：
10.2196/44194
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发表时间：
2023-11-14
影响因子：
2.7
通讯作者：
Niendam, Tara A.
中科院分区：
文献类型：
--
作者：
Tully, Laura M.;Nye, Kathleen E.;Ereshefsky, Sabrina;Tryon, Valerie L.;Hakusui, Christopher Komei;Savill, Mark;Niendam, Tara A.
关键词：
越来越多地使用电子健康技术和用户数据来推动早期精神病(EP)的早期识别和干预算法，这就需要实施伦理数据使用实践，以增加用户的可接受性和信任。首先，该研究探讨了EP社区合作伙伴对数据共享最佳实践的看法，包括对合乎道德的数据共享的信念、态度和偏好，以及如何最好地提交最终用户许可协议(EULA)。其次，我们提供了一个采用以用户为中心的设计方法来开发符合社区合作伙伴观点和优先顺序的EULA协议的测试案例。我们进行了一项探索性的、定性的、基于焦点组的研究，探索在加州早期精神病干预网络中参与提供或接受EP护理的个人之间的精神健康数据共享和隐私偏好。通过对焦点小组成绩单的内容分析确定了关键主题。此外，我们使用以用户为中心的设计方法举办了研讨会，以制定解决参与者优先事项的EULA。总共有24名参与者参与了这项研究(14名EP提供者、6名客户和4名家庭成员)。与会者报告说，尽管他们敏锐地意识到数字领域中普遍存在的第三方共享、违规风险和隐藏在欧盟协议法律语言中的动机，但他们仍然接受数据共享。因此，他们报告说，他们感觉自己的数据失去了控制和缺乏保护。与会者表示，可以通过对与第三方共享数据的用户一级控制和一个可理解、透明的《协议》，包括多种呈现方式、不超过八年级阅读水平的文本以及对关键术语的明确定义，来缓解这些担忧。这些发现被成功地整合到EULA和数据选择加入流程的开发中，导致88.1%(421/478)的观看视频的客户同意共享数据。许多被认为与精神健康环境中的数据共享实践相关的因素在客户、家庭成员和提供或接受EP护理的提供者中是一致的。这些社区合作伙伴的优先事项可以成功地纳入制定EULA的做法，这可能会导致较高的自愿数据共享率。
Increased use of eHealth technology and user data to drive early identification and intervention algorithms in early psychosis (EP) necessitates the implementation of ethical data use practices to increase user acceptability and trust. First, the study explored EP community partner perspectives on data sharing best practices, including beliefs, attitudes, and preferences for ethical data sharing and how best to present end-user license agreements (EULAs). Second, we present a test case of adopting a user-centered design approach to develop a EULA protocol consistent with community partner perspectives and priorities. We conducted an exploratory, qualitative, and focus group–based study exploring mental health data sharing and privacy preferences among individuals involved in delivering or receiving EP care within the California Early Psychosis Intervention Network. Key themes were identified through a content analysis of focus group transcripts. Additionally, we conducted workshops using a user-centered design approach to develop a EULA that addresses participant priorities. In total, 24 participants took part in the study (14 EP providers, 6 clients, and 4 family members). Participants reported being receptive to data sharing despite being acutely aware of widespread third-party sharing across digital domains, the risk of breaches, and motives hidden in the legal language of EULAs. Consequently, they reported feeling a loss of control and a lack of protection over their data. Participants indicated these concerns could be mitigated through user-level control for data sharing with third parties and an understandable, transparent EULA, including multiple presentation modalities, text at no more than an eighth-grade reading level, and a clear definition of key terms. These findings were successfully integrated into the development of a EULA and data opt-in process that resulted in 88.1% (421/478) of clients who reviewed the video agreeing to share data. Many of the factors considered pertinent to informing data sharing practices in a mental health setting are consistent among clients, family members, and providers delivering or receiving EP care. These community partners’ priorities can be successfully incorporated into developing EULA practices that can lead to high voluntary data sharing rates.
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