Why trust digital health? Understanding the perspectives of communities affected by BBVs/STIs and social stigma

Newman, Christy E.; MacGibbon, James; Smith, Anthony K J; Broady, Timothy; Lupton, Deborah; Davis, Mark David McGregor; Bear, Brandon; Bath, Nicky; Comensoli, Daniel; Cook, Teddy; Duck-Chong, Elizabeth; Ellard, Jeane; Kim, Jules; Rule, John; Holt, Martin

doi:10.26190/5f6d72f17d2b5

Cited by 4 publications

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“…To build trust in the system, it may be necessary to consult priority populations about the design of the system, bolster its security and control features, demonstrate how the government has responded to previous problems with digital systems, and invest in sustained and meaningful community engagement. This may require additional investment in community-based education to support people who want to use electronic health records without compromising their health care, privacy, or security [ 11 , 16 , 36 ].…”

Section: Discussionmentioning

confidence: 99%

“…We conducted a national, online survey of Australian adults’ engagement with and attitudes to digital health in April-June 2020 [ 36 ]. Eligible participants were people aged 18 or over who lived in Australia.…”

Section: Methodsmentioning

confidence: 99%

“…The survey, which was hosted on UNSW’s Qualtrics (Provo, UT) account, assessed participants’ demographics (including membership of priority populations), levels of health and wellbeing, degree of access to the internet, use of online, mobile and digital health platforms, levels of trust in digital technologies and institutions, and experiences of stigma and discrimination [ 36 ]. Some of the items about trust in technologies and institutions were adapted from the Swinburne National Technology and Society Monitor [ 38 ].…”

Section: Methodsmentioning

confidence: 99%

“…We chose to focus on opting out or deleting My Health Record (as opposed to active use of the record, for example) to identify people who may have heightened concerns about the system. Participants who had retained their records were asked what types of information in the My Health Record system were useful to them (from a list of 7 types) and the benefits of using the system (from 8 benefits) [ 36 ]. Participants who had opted out were asked to nominate why from a list of 11 reasons [ 36 ].…”

Section: Methodsmentioning

confidence: 99%

“…Participants who had retained their records were asked what types of information in the My Health Record system were useful to them (from a list of 7 types) and the benefits of using the system (from 8 benefits) [ 36 ]. Participants who had opted out were asked to nominate why from a list of 11 reasons [ 36 ].…”

Section: Methodsmentioning

confidence: 99%

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Knowledge of Australia’s My Health Record and factors associated with opting out: Results from a national survey of the Australian general population and communities affected by HIV and sexually transmissible infections

et al. 2023

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My Health Record is Australia’s national, digital, personal health record system. All Australians have a record in the system unless they choose to opt out of it. Concerns about privacy, security and unwanted sharing of data, particularly in marginalised populations, may impede its use. We conducted a national, online survey of Australians’ attitudes to digital health in April-June 2020. The sample (N = 2,240) was recruited from the general population and four priority populations affected by HIV and other sexually transmissible infections: gay and bisexual men, people living with HIV, sex workers, and trans and gender diverse people. This analysis assesses factors associated with greater knowledge of My Health Record and the likelihood of opting out of the system. Due to increased concerns about data privacy and misuse, we hypothesised that priority population members would know more about and be more likely to opt out of the system. We found that most of the sample (71.2%) knew little about My Health Record and 29.4% had opted out of the system. Greater knowledge of My Health Record was associated with younger age, having a university degree, having one or more health conditions, and being trans or gender diverse. Being a student, unemployed, receiving government benefits, or having poor self-reported health, were associated with less knowledge. Opting out of My Health Record was associated with having a university degree, one or more health conditions, and being a priority population member. The likelihood of opting out was lower among people born overseas, residents of Queensland, and people who were students, unemployed, or receiving government benefits. We recommend additional investment in community-based education to address people’s concerns about My Health Record and support people to use the system without compromising their health care, privacy, or security. Opting out may be a legitimate choice for people who perceive more risks than benefits from the system.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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Knowledge of Australia’s My Health Record and factors associated with opting out: Results from a national survey of the Australian general population and communities affected by HIV and sexually transmissible infections

et al. 2023

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Engaging Stigmatised Communities in Australia with Digital Health Systems: Towards Data Justice in Public Health

et al. 2023

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Introduction 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. Methods 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. Results 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. Conclusions 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. Policy Implications 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.

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‘Change creates change’ – older female sex workers’ experiences through the early COVID-19 pandemic

Brennan

Fitzgerald

Dean

2023

Culture, Health & Sexuality

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Why trust digital health? Understanding the perspectives of communities affected by BBVs/STIs and social stigma

Cited by 4 publications

References 0 publications

Knowledge of Australia’s My Health Record and factors associated with opting out: Results from a national survey of the Australian general population and communities affected by HIV and sexually transmissible infections

Knowledge of Australia’s My Health Record and factors associated with opting out: Results from a national survey of the Australian general population and communities affected by HIV and sexually transmissible infections

Engaging Stigmatised Communities in Australia with Digital Health Systems: Towards Data Justice in Public Health

‘Change creates change’ – older female sex workers’ experiences through the early COVID-19 pandemic

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