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

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

National Surveillance of Home-Based HIV Testing Among Australian Gay and Bisexual Men, 2018–2020: Uptake After Commercial Availability of HIV Self-Tests

HIV self-testing allows people to collect samples and test themselves at home, addressing known barriers to facility-based testing. We aimed to measure the uptake of home HIV testing among Australian gay and bisexual men (GBM). Using national cross-sectional data from the Australian Gay Community Periodic Surveys, we assessed trends in home HIV testing among non-HIV positive GBM between 2018 and 2020. Overall, the use of home HIV testing was low, but slightly increased during 2018–2020 (from 0.3 to 0.8%, RR = 1.54, 95%CI = 1.23–1.92, p-trend < 0.001). Testing at home was more likely among non-HIV-positive GBM who were born overseas and recently arrived in Australia, at higher risk of HIV, and infrequent HIV testers. Given the greater use of home testing by men at higher risk of HIV, recent migrants and infrequent testers, all priority groups in Australia’s HIV epidemic, we recommend increasing access to HIV self-testing to enhance uptake in these and other groups of GBM

Stigmatising attitudes towards people who inject drugs, and people living with blood borne viruses or sexually transmissible infections in a representative sample of the Australian population

Stigma has significant detrimental health outcomes for those affected. This study examined socio-demographic characteristics that were associated with stigmatising attitudes among the general population towards people who inject drugs, and people living with blood borne viruses or sexually transmissible infections. Questions were included in the Australian Survey of Social Attitudes (total sample = 1,001). Attitudes towards each of the target populations were measured by 5-item stigma scales. Bivariate analyses and multiple regression analyses were conducted to identify socio-demographic characteristics associated with stigmatising attitudes. Knowing a person affected by a stigmatised attribute was associated with reduced stigmatising attitudes, while voting for a conservative political party was associated with increased stigmatising attitudes. Age, gender, education, income, and marital status were each related to some stigmatising attitudes. Results also highlight differences between attitudes towards a stigmatised behaviour (i.e., injecting drug use) and stigmatised conditions (i.e., blood borne viruses and sexually transmissible infections). Identifying socio-demographic characteristics that are associated with stigmatising attitudes may have global implications for informing stigma reduction interventions, in order to promote positive health outcomes for affected communities

Increasing preexposure prophylaxis use and 'net prevention coverage' in behavioural surveillance of Australian gay and bisexual men.

OBJECTIVES: To assess trends in HIV prevention strategies among Australian gay and bisexual men (GBM) since the introduction of pre-exposure prophylaxis (PrEP), the level of net prevention coverage (the use of safe strategies), and the characteristics of HIV-negative and untested GBM who remain at risk of HIV. DESIGN: Repeated behavioural surveillance of GBM recruited from venues, events and online in seven Australian states and territories. METHODS: Participants with casual male partners were included. Trends in sexual practices, prevention strategies, net prevention coverage and the characteristics of 'at risk' participants were assessed with binary and multivariate logistic regression. RESULTS: 32,048 survey responses (2014-19) were included. The proportion of participants who reported consistent condom use declined (44.6%-23.2%). The proportion who reported any condomless anal intercourse with casual partners (CAIC) increased (37.4%-62.0%) but net prevention coverage also increased (68.1%-74.9%), with higher levels of undetectable viral load (UVL) among HIV-positive participants and rapidly increasing PrEP use by HIV-negative participants. PrEP became the most commonly reported prevention strategy in 2019 (31.1%). The analysis of 'at risk' participants showed that they became more likely to report frequent CAIC but had fewer partners and more partners with UVL or on PrEP. 'At risk' participants became more likely to identify as bisexual and to be born overseas. CONCLUSIONS: There has been a rapid, historic shift in HIV prevention among GBM in Australia. Net prevention coverage has increased among GBM and 'at risk' GBM have become less at risk of HIV, facilitating reductions in HIV transmission

Mpox Illness Narratives: Stigmatising Care and Recovery During and After an Emergency Outbreak

In May 2022, a global outbreak of mpox (formerly monkeypox virus) affected thousands of mainly gay and bisexual men. Mpox is usually a time-limited illness that can involve fever, pain, and skin lesions, but may require hospitalisation. There is scant research into the firsthand experiences of people affected by mpox, including experiences of symptoms, healthcare, and recovery. This study considers the different illness narratives of people who experienced mpox in Australia in 2022. In-depth interviews and 6-month follow-up interviews were conducted with 16 people, including 13 people diagnosed with mpox and three close contacts. All participants were cisgender gay or bisexual men living in Australia. Participants’ accounts described minor to severe periods of sickness, negative and stigmatising experiences engaging with healthcare, and some participants experienced long-term effects on their sexual well-being and complications from mpox. The emergency outbreak context meant that mpox was highly distressing, making it difficult to manage and producing varying forms of disruption to everyday life. Mpox was narrated as disruptive in different ways: as a minor interruption to holiday plans, a prolonged period of poor health, or a biographically disruptive event prompting a re-evaluation of sexual values and health. This analysis demonstrates that an unfamiliar emergent disease outbreak related to sexual practices and sociality can reconfigure personal life and sexual well-being, suggesting a need to focus on providing quality patient care in outbreaks of mpox and other infectious diseases

Policing transgender people and Intimate Partner Violence (IPV)

Knowledge regarding policing of transgender people in situations of intimate partner violence (IPV) is scarce within policing literature. While this may be because transgender victim-survivors of IPV are one of the most hidden groups of IPV survivors, transgender people face specific and unique forms of IPV related to their identity. Police officers, therefore, need to be aware of the specific forms of IPV transgender victim-survivors experience and must be cognizant of the specific circumstances involved when responding to incidents of transgender IPV. Police recognition of transgender IPV will increase the reporting of transgender IPV; effect responses to transgender IPV; increase outcomes of justice for victims and; push recommendations concerning changing current police responses and operational practices regarding IPV. Yet, bias towards individuals who identify as transgender has been found in the literature regarding police practices and perceptions of LGBTIQ+ people. Research suggests transgender people are generally uncomfortable seeking help from the police. Therefore, policing transgender victim-survivors of IPV poses an ongoing problem since notions of exclusion and the sense of ‘difference’ transgender people have in terms of their perceived or outward identity form barriers between police and members of the transgender community during times of victimization

Perceived Stigma Among Serbian Parents of Children with Autism Spectrum Disorder and Children with Physical Disabilities: Validation of a New Instrument

Limited research has been done to explore parental perception of stigma. The present study developed the Parental Perceptions of Public Attitudes Scale to examine perceived stigma among Serbian parents of children with autism spectrum disorder (ASD) and children with physical disabilities (PD). The convenience sample consisted of 82 participants. A confirmatory factor analysis was done to validate the scale and a 9-item solution clustered into two factors proved to be the best model. Overall, the parents reported a low-to-moderate level of perceived stigma. Parents of children with ASD reported higher degree of perceived stigma compared to the parents of children with PD. The scale was useful in measuring parental perceived stigma and could be used in other Eastern European countries