Smith Anthony K J, Davis Mark D M, MacGibbon James, Broady Timothy R, Ellard Jeanne, Rule John, Cook Teddy, Duck-Chong Elizabeth, Holt Martin, Newman Christy E
Centre for Social Research in Health (CSRH), UNSW Sydney, Sydney, Australia.
School of Social Sciences, Monash University, Melbourne, Australia.
Sex Res Social Policy. 2023 Feb 6:1-12. doi: 10.1007/s13178-023-00791-6.
In 2018, following government policy changes to Australia's national electronic health record system, 'My Health Record', consumer advocates-including organisations representing people living with HIV, people who use drugs and sex workers-raised concerns about privacy and data security. Responding to these controversies, this study explores the practical, ethical and political complexities of engaging stigmatised communities with digital health systems.
We conducted 16 qualitative semi-structured interviews in 2020 with key informants representing communities who experience stigma, discrimination and marginalisation in Australia. These communities included people living with HIV, sex workers, people who inject drugs, gay and bisexual men and transgender and gender diverse people. We conducted a reflexive thematic analysis.
Key informants were sceptical of proposed benefits of electronic health records for their communities, and concerned about privacy risks and the potential for discrimination. Meaningful consultation, consent mechanisms and tackling structural stigma were raised as solutions for engaging communities.
Although communities could benefit from being included in digital health systems, significant cultural, legal and social reforms from government were believed to be necessary to build trust in digital health systems. We argue that these forms of data justice are necessary for effective future systems.
Engaging stigmatised communities-including in relation to gender, sexuality, sex work, drug use, HIV-requires a commitment to data justice. The design and implementation of digital health systems requires investment in ongoing and meaningful consultation with communities and representative organisations.
2018年，随着澳大利亚国家电子健康记录系统“我的健康记录”的政府政策变化，包括代表艾滋病毒感染者、吸毒者和性工作者的组织在内的消费者权益倡导者对隐私和数据安全表示担忧。针对这些争议，本研究探讨了让受污名化社区参与数字健康系统的实际、伦理和政治复杂性。
2020年，我们对代表澳大利亚经历污名、歧视和边缘化社区的关键信息提供者进行了16次定性半结构化访谈。这些社区包括艾滋病毒感染者、性工作者、注射吸毒者、男同性恋者和双性恋者以及跨性别者和性别多样化者。我们进行了反思性主题分析。
关键信息提供者对电子健康记录给他们社区带来的预期好处持怀疑态度，并担心隐私风险和歧视可能性。有意义的协商、同意机制和解决结构性污名被提出作为让社区参与的解决方案。
尽管社区可能会从纳入数字健康系统中受益，但政府进行重大的文化、法律和社会改革被认为是建立对数字健康系统信任的必要条件。我们认为这些数据正义形式对于有效的未来系统是必要的。
让受污名化社区参与——包括在性别、性取向、性工作、吸毒、艾滋病毒方面——需要对数据正义的承诺。数字健康系统的设计和实施需要投入资金，与社区和代表性组织进行持续且有意义的协商。
