PDF(Pubmed)
Abstract：
Along with the proliferation of health information technologies (HITs), there is a growing need to understand the potential privacy risks associated with using such tools. Although privacy policies are designed to inform consumers, such policies have consistently been found to be confusing and lack transparency.
This study aims to present consumer preferences for accessing privacy information; develop and apply a privacy policy risk assessment tool to assess whether existing HITs meet the recommended privacy policy standards; and propose guidelines to assist health professionals and service providers with understanding the privacy risks associated with HITs, so that they can confidently promote their safe use as a part of care.
In phase 1, participatory design workshops were conducted with young people who were attending a participating headspace center, their supportive others, and health professionals and service providers from the centers. The findings were knowledge translated to determine participant preferences for the presentation and availability of privacy information and the functionality required to support its delivery. Phase 2 included the development of the 23-item privacy policy risk assessment tool, which incorporated material from international privacy literature and standards. This tool was then used to assess the privacy policies of 34 apps and e-tools. In phase 3, privacy guidelines, which were derived from learnings from a collaborative consultation process with key stakeholders, were developed to assist health professionals and service providers with understanding the privacy risks associated with incorporating HITs as a part of clinical care.
When considering the use of HITs, the participatory design workshop participants indicated that they wanted privacy information to be easily accessible, transparent, and user-friendly to enable them to clearly understand what personal and health information will be collected and how these data will be shared and stored. The privacy policy review revealed consistently poor readability and transparency, which limited the utility of these documents as a source of information. Therefore, to enable informed consent, the privacy guidelines provided ensure that health professionals and consumers are fully aware of the potential for privacy risks in using HITs to support health and well-being.
A lack of transparency in privacy policies has the potential to undermine consumers\' ability to trust that the necessary measures are in place to secure and protect the privacy of their personal and health information, thus precluding their willingness to engage with HITs. The application of the privacy guidelines will improve the confidence of health professionals and service providers in the privacy of consumer data, thus enabling them to recommend HITs to provide or support care.
This study aims to present consumer preferences for accessing privacy information; develop and apply a privacy policy risk assessment tool to assess whether existing HITs meet the recommended privacy policy standards; and propose guidelines to assist health professionals and service providers with understanding the privacy risks associated with HITs, so that they can confidently promote their safe use as a part of care.
In phase 1, participatory design workshops were conducted with young people who were attending a participating headspace center, their supportive others, and health professionals and service providers from the centers. The findings were knowledge translated to determine participant preferences for the presentation and availability of privacy information and the functionality required to support its delivery. Phase 2 included the development of the 23-item privacy policy risk assessment tool, which incorporated material from international privacy literature and standards. This tool was then used to assess the privacy policies of 34 apps and e-tools. In phase 3, privacy guidelines, which were derived from learnings from a collaborative consultation process with key stakeholders, were developed to assist health professionals and service providers with understanding the privacy risks associated with incorporating HITs as a part of clinical care.
When considering the use of HITs, the participatory design workshop participants indicated that they wanted privacy information to be easily accessible, transparent, and user-friendly to enable them to clearly understand what personal and health information will be collected and how these data will be shared and stored. The privacy policy review revealed consistently poor readability and transparency, which limited the utility of these documents as a source of information. Therefore, to enable informed consent, the privacy guidelines provided ensure that health professionals and consumers are fully aware of the potential for privacy risks in using HITs to support health and well-being.
A lack of transparency in privacy policies has the potential to undermine consumers\' ability to trust that the necessary measures are in place to secure and protect the privacy of their personal and health information, thus precluding their willingness to engage with HITs. The application of the privacy guidelines will improve the confidence of health professionals and service providers in the privacy of consumer data, thus enabling them to recommend HITs to provide or support care.
摘要：
随着卫生信息技术(HIT)的普及，越来越需要了解与使用此类工具相关的潜在隐私风险。尽管隐私政策旨在告知消费者，这些政策一直被发现令人困惑，缺乏透明度。
这项研究旨在呈现消费者对获取隐私信息的偏好；开发和应用隐私政策风险评估工具，以评估现有HIT是否符合建议的隐私政策标准；并提出指导方针，以协助卫生专业人员和服务提供商了解与HIT相关的隐私风险，这样他们就可以自信地促进他们的安全使用，作为护理的一部分。
在第一阶段，参与式设计研讨会与参加活动的顶部空间中心的年轻人进行。他们支持的其他人，以及中心的卫生专业人员和服务提供者。对调查结果进行了知识翻译，以确定参与者对隐私信息的呈现和可用性以及支持其交付所需的功能的偏好。第二阶段包括开发23项隐私政策风险评估工具，其中纳入了国际隐私文献和标准的材料。然后，该工具用于评估34个应用程序和电子工具的隐私政策。在第三阶段，隐私指南，这是从与关键利益相关者的合作协商过程中学到的，旨在帮助卫生专业人员和服务提供商了解与将HIT纳入临床护理相关的隐私风险。
在考虑使用HIT时，参与式设计研讨会参与者表示，他们希望隐私信息易于访问，透明,并且用户友好，使他们能够清楚地了解将收集哪些个人和健康信息以及如何共享和存储这些数据。隐私政策审查显示，可读性和透明度一直很差，这限制了这些文档作为信息来源的效用。因此,为了实现知情同意，提供的隐私准则确保卫生专业人员和消费者充分意识到使用HIT来支持健康和福祉的潜在隐私风险。
隐私政策缺乏透明度，有可能削弱消费者相信已经采取必要措施来保护和保护其个人和健康信息的隐私的能力。从而排除了他们与HIT接触的意愿。隐私准则的应用将提高卫生专业人员和服务提供者对消费者数据隐私的信心,从而使他们能够推荐HIT提供或支持护理。
这项研究旨在呈现消费者对获取隐私信息的偏好；开发和应用隐私政策风险评估工具，以评估现有HIT是否符合建议的隐私政策标准；并提出指导方针，以协助卫生专业人员和服务提供商了解与HIT相关的隐私风险，这样他们就可以自信地促进他们的安全使用，作为护理的一部分。
在第一阶段，参与式设计研讨会与参加活动的顶部空间中心的年轻人进行。他们支持的其他人，以及中心的卫生专业人员和服务提供者。对调查结果进行了知识翻译，以确定参与者对隐私信息的呈现和可用性以及支持其交付所需的功能的偏好。第二阶段包括开发23项隐私政策风险评估工具，其中纳入了国际隐私文献和标准的材料。然后，该工具用于评估34个应用程序和电子工具的隐私政策。在第三阶段，隐私指南，这是从与关键利益相关者的合作协商过程中学到的，旨在帮助卫生专业人员和服务提供商了解与将HIT纳入临床护理相关的隐私风险。
在考虑使用HIT时，参与式设计研讨会参与者表示，他们希望隐私信息易于访问，透明,并且用户友好，使他们能够清楚地了解将收集哪些个人和健康信息以及如何共享和存储这些数据。隐私政策审查显示，可读性和透明度一直很差，这限制了这些文档作为信息来源的效用。因此,为了实现知情同意，提供的隐私准则确保卫生专业人员和消费者充分意识到使用HIT来支持健康和福祉的潜在隐私风险。
隐私政策缺乏透明度，有可能削弱消费者相信已经采取必要措施来保护和保护其个人和健康信息的隐私的能力。从而排除了他们与HIT接触的意愿。隐私准则的应用将提高卫生专业人员和服务提供者对消费者数据隐私的信心,从而使他们能够推荐HIT提供或支持护理。
