Diversity via datafication? Digital patient records and citizenship for sexuality and gender diverse people

被引:0
作者
Mark D. M. Davis
Allegra Schermuly
Anthony K. J. Smith
Christy Newman
机构
[1] Monash University,School of Social Sciences
[2] UNSW,Centre for Health Social Research
来源
BioSocieties | 2023年 / 18卷
关键词
Digital health; Sexuality and gender; Australia; My Health Record;
D O I
暂无
中图分类号
学科分类号
摘要
In 2018, the Australian Government adopted an ‘opt-out’ strategy to increase participation in My Health Record (MHR), the national digital patient record system. Opt out was rationalised through discourse on the universal right to health. Media controversy ensued due to privacy fears, security and commercial exploitation of patient information. LGBT community organisations warned that people with complex health needs should consider their privacy and legal situation when deciding whether or not to opt out of MHR. With reference to the health needs of sexuality and gender diverse people, we examine MHR’s rights universalism, possessive individualism, and state-based rationalisation of health governance. MHR hails all but no-one in particular, erasing diversity and straightwashing data medicine. It is a technological solution to state-based imperatives for health governance, an emphasis that does not serve minority communities or address health needs that attract stigma and prejudice. We counterpose these effects with citizenship framings seated in critical approaches to data assemblages and sexuality and gender diversity. We suggest ways in which data medicine, of which MHR is but one example, can be made more relevant and effective for individuals and communities whose healthcare is poorly served by mainstream health systems.
引用
收藏
页码:451 / 472
页数:21
相关论文
共 160 条
  • [1] Adams J(2013)Gay men’s explanations of health and how to improve it Qualitative Health Research 23 887-899
  • [2] McCreanor T(2018)Young people, digital media research and counterpublic sexual health Sexualities 21 1331-1336
  • [3] Braun V(2017)Patient access to health records: Striving for the Swedish ideal BMJ 357 j2069-S11
  • [4] Albury K(2019)Digital health benefits evaluation frameworks: Building the evidence to support Australia’s National Digital Health Strategy Medical Journal Australia 210 S9-857
  • [5] Armstrong S(2020)The role of social support in moderating the relationship between HIV centrality, internalised stigma and psychological distress for people living with HIV AIDS Care 32 850-381
  • [6] Biggs J(2016)Algorithmic citizenship, digital statelessness GeoHumanities 2 377-696
  • [7] Willcocks A(2020)Barriers to accessing sexual health services for transgender and male sex workers: A systematic qualitative meta-summary AIDS and Behaviour 24 682-173
  • [8] Burger M(2018)Sexual orientation disclosure in health care: A systematic review British Journal of General Practice 4 171-3
  • [9] Makeham M(2017)If they don’t count us, we don’t count: Trump Administration rolls back sexual orientation and gender identity data collection LGBT Health 92 1-E790
  • [10] Brener L(2014)Eliminating LGBTIQQ health disparities: The associated roles of electronic health records and institutional culture Hastings Center Report 184 E789-629