Despite the expanding digitisation of individual health data, informed consent for the collection and use of health data is seldom explicitly sought in public sector clinics in South Africa. This study aims to identify perceptions of informed consent practices for health data capture, access, and use in Gauteng and the Western Cape provinces of South Africa. Data collection from September to December 2021 included in-depth interviews with healthcare providers (n = 12) and women (n = 62) attending maternity services. Study findings suggest that most patients were not aware that their data were being used for purposes beyond the individualised provision of medical care. Understanding the concept of anonymised use of electronic health data was at times challenging for patients who understood their data in the limited context of paper-based folders and booklets. When asked about preferences for electronic data, patients overwhelmingly were in favour of digitisation. They viewed electronic access to their health data as facilitating rapid and continuous access to health information. Patients were additionally asked about preferences, including delivery of health information, onward health data use, and recontacting. Understanding of these use cases varied and was often challenging to convey to participants who understood their health data in the context of information inputted into their paper folders. Future systems need to be established to collect informed consent for onward health data use. In light of perceived ties to the care received, these systems need to ensure that patient preferences do not impede the content nor quality of care received.

中文翻译：

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南非产妇患者和提供者在电子时代对未来健康数据使用的偏好：一项定性研究。

尽管个人健康数据的数字化不断扩大，但南非的公共部门诊所很少明确寻求收集和使用健康数据的知情同意。本研究旨在确定南非豪登省和西开普省对健康数据采集、访问和使用的知情同意做法的看法。2021 年 9 月至 12 月的数据收集包括对医疗保健提供者 (n = 12) 和接受产科服务的妇女 (n = 62) 的深入访谈。研究结果表明，大多数患者并不知道他们的数据被用于提供个性化医疗服务之外的目的。对于在纸质文件夹和小册子的有限环境中理解数据的患者来说，理解电子健康数据匿名使用的概念有时是具有挑战性的。当被问及对电子数据的偏好时，绝大多数患者赞成数字化。他们认为以电子方式获取健康数据有助于快速、持续地获取健康信息。患者还被询问了偏好，包括健康信息的提供、后续健康数据的使用和重新联系。对这些用例的理解各不相同，并且通常很难向那些在纸质文件夹中输入的信息中理解其健康数据的参与者传达这些信息。未来需要建立系统来收集后续健康数据使用的知情同意。鉴于与所接受的护理的感知联系，这些系统需要确保患者的偏好不会妨碍所接受的护理的内容或质量。