Informed, but uncertain: managing transmission risk and isolation in the 2022 mpox outbreak among gay and bisexual men in Australia.

In 2022, a global outbreak of mpox (formerly 'monkeypox') emerged in non-endemic countries, including Australia, predominantly affecting gay, bisexual and other men who have sex with men. Public health advice on transmission and isolation emerged rapidly from different sources, sometimes conflicting and producing uncertainty. Using the concept of 'counterpublic health', which acknowledges the incorporation of official science and experiences of affected communities into embodied practice, this paper investigates how people affected by mpox in Australia managed risk of transmission and navigated self-isolation. In-depth interviews were conducted with 16 people: 13 people diagnosed with mpox and three close contacts. All participants were cisgender gay and bisexual men living in Australia. Participants thought critically about public health advice, often finding it restrictive and unresponsive to the needs of people with mpox. Participants' decisions about reducing mpox risk and isolating often drew on experiences with other infections (i.e. HIV; COVID-19) and were made collaboratively with the people closest to them (e.g. partners, friends, family) to sustain relationships. Future public health responses to infectious disease outbreaks would benefit from identifying more opportunities to formalise and embed mechanisms to obtain feedback from affected communities so as to inform responses.

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.

The Potential Role of Undetectable = Untransmittable (U = U) in Reducing HIV Stigma among Sexual Minority Men in the US.

The Undetectable = Untransmittable (U = U) message and its scientific underpinnings have been widely suggested to reduce HIV stigma. However, misunderstanding and skepticism about U = U may prevent this destigmatizing potential from being fully realized. This cross-sectional study examined associations between U = U belief (belief that someone with a sustained undetectable viral load has zero risk of sexually transmitting HIV) and HIV stigma among US sexual minority men. Differences by serostatus and effects of brief informational messaging were also explored. The survey was completed online by 106 men living with HIV and 351 HIV-negative/status-unknown men (2019-2020). Participants were 18-83 years old (M[SD] = 41[13.0]). Most were non-Hispanic White (70.0%) and gay (82.9%). Although nearly all participants (95.6%) were aware of U = U, only 41.1% believed U = U. A greater percentage of participants living with HIV (66.0%) believed U = U compared with HIV-negative/status-unknown participants (33.6%). Among participants living with HIV, U = U belief was not significantly associated with perceived, internalized, or experienced HIV stigma or with viral load prejudice (prejudice against people who have a detectable HIV viral load). Among HIV-negative/status-unknown participants, U = U belief was associated with less frequently enacted HIV discrimination, more positive feelings toward people with an undetectable viral load, and lower personal endorsement of stigmatizing beliefs. Brief informational messaging about U = U did not affect most stigma dimensions and did not favorably affect any. Interventions are needed to correct commonly held, outdated misconceptions about HIV transmission risk. Such initiatives must not only engage people living with HIV but also engage HIV-negative/status-unknown people to maximize the destigmatizing potential of U = U.

RESUMEN: Para reducir el estigma del VIH se ha recomendado difundir extensivamente el mensaje Indetectable = Intransmisible (U = U) y sus fundamentos científicos. Sin embargo, falta de comprensión y escepticismo acerca de U = U pueden impedir que se realice plenamente su potencial desestigmatizante. Este estudio transversal examinó las asociaciones entre la creencia U = U (creencia de que alguien con una carga viral indetectable sostenida tiene cero riesgo de transmitir sexualmente el VIH) y el estigma del VIH entre hombres de minorías sexuales estadounidenses. También se exploró si el efecto de los mensajes informativos breves dependía del estatus serológico. La encuesta fue completada en línea por 106 hombres que viven con el VIH y 351 hombres VIH negativos o de estatus desconocido (2019­2020). Los participantes tenían entre 18 y 83 años (M[DS] = 41[13,0]). La mayoría eran blancos no hispanos (70,0%) y gay (82,9%). Aunque casi todos los participantes (95,6%) sabían sobre U = U, sólo el 41,1% creían en U = U. Un mayor porcentaje de participantes con VIH (66,0%) creían que U = U en comparación con los participantes VIH negativos o de estatus desconocido (33,6%). Entre los participantes con VIH, la creencia U = U no se asoció significativamente con el estigma del VIH percibido, interiorizado o experimentado ni con el prejuicio sobre la carga viral (prejuicio contra las personas que tienen una carga viral de VIH detectable). Entre los participantes VIH negativos/con estatus desconocido, la creencia U = U se asoció con menor frecuencia de discriminación por VIH, sentimientos más positivos hacia las personas con una carga viral indetectable y menor respaldo personal a las creencias estigmatizantes. Los mensajes informativos breves sobre U = U no afectaron la mayoría de las dimensiones del estigma y no afectó favorablemente a ninguno. Se necesitan intervenciones para corregir conceptos frecuentes sobre el riesgo de transmisión del VIH que son erróneos y obsoletos. Para maximizar el potencial desestigmatizador de U = U, estas iniciativas no sólo deben involucrar a las personas que viven con el VIH, sino también a las personas VIH-negativas o de estatus desconocido.

Toward Consent in Molecular HIV Surveillance?: Perspectives of Critical Stakeholders.

BACKGROUND: The emergence of molecular HIV surveillance (MHS) and cluster detection and response (CDR) programs as key features of the United States (US) HIV strategy since 2018 has caused major controversies. HIV surveillance programs that re-use individuals' routinely collected clinical HIV data do not require consent on the basis that the public benefit of these programs outweighs individuals' rights to opt out. However, criticisms of MHS/CDR have questioned whether expanded uses of HIV genetic sequence data for prevention reach beyond traditional public health ethics frameworks. This study aimed to explore views on consent within MHS/CDR among critical stakeholders. METHODS: In 2021 we interviewed 26 US HIV stakeholders who identified as being critical or concerned about the rollout of MHS/CDR. Stakeholders included participants belonging to networks of people living with HIV, other advocates, academics, and public health professionals. This analysis focused on identifying the range of positions among critical and concerned stakeholders on consent affordances, opt-outs, how to best inform people living with HIV about how data about them are used in public health programs, and related ethical issues. RESULTS: Participants were broadly supportive of introducing some forms of consent into MHS/CDR. However, they differed on the specifics of implementing consent. While some participants did not support introducing consent affordances, all supported the idea that people living with HIV should be informed about how HIV surveillance and prevention is conducted and how individuals' data are used. CONCLUSIONS: MHS/CDR has caused sustained controversy. Among critical stakeholders, consent is generally desirable but contested, although the right for people living with HIV to be informed was centrally supported. In an era of big data-driven public health interventions and routine uses of HIV genetic sequence data in surveillance and prevention, CDC and other agencies should revisit public health ethics frameworks and consider the possibility of consent processes.

Health policy counterpublics: Enacting collective resistances to US molecular HIV surveillance and cluster detection and response programs.

Health policies and the problems they constitute are deeply shaped by multiple publics. In this article we conceptualize health policy counterpublics: temporally bounded socio-political forms that aim to cultivate particular modes of conduct, generally to resist trajectories set by arms of the state. These counterpublics often emerge from existing social movements and involve varied forms of activism and advocacy. We examine a health policy counterpublic that has arisen in response to new forms of HIV public health surveillance by drawing on public documents and interview data from 2021 with 26 stakeholders who were critical of key policy developments. Since 2018, the national rollout of molecular HIV surveillance (MHS) and cluster detection and response (CDR) programs in the United States has produced sustained controversies among HIV stakeholders, including among organized networks of people living with HIV. This article focuses on how a health policy counterpublic formed around MHS/CDR and how constituents problematized the policy agenda set in motion by federal health agencies, including in relation to data ethics, the meaningful involvement of affected communities, informed consent, the digitization of health systems, and HIV criminalization. Although familiar problems in HIV policymaking, concerns about these issues have been reconfigured in response to the new sociotechnical milieu proffered by MHS/CDR, generating new critical positions aiming to remake public health. Critical attention to the scenes within which health policy controversies play out ought to consider how (counter)publics are made, how problems are constituted, and the broader social movement dynamics and activist resources drawn upon to contest and reimagine policymaking in public life.

Beyond the challenge to research integrity: imposter participation in incentivised qualitative research and its impact on community engagement.

Participant recruitment for qualitative research often offers incentives (honoraria; financial compensation) to increase participation and to recognise lived expertise and time involved in research. While not necessarily a new concern for survey and other quantitative based research, 'spam', 'bot', and other inauthentic forms of research participation has rarely been an apparent issue for qualitative research, given it often involves levels of interaction with potential participants prior to the conduct of in-depth interviews and other methods of data generation. This is no longer the case. A troubling new occurrence has meant that recruitment calls for qualitative research with incentives on public-facing social media have attracted 'imposter' expressions of interest and research participation. In this commentary, we explore this challenge that goes beyond research integrity. In particular, we consider the risks of employing strategies to screen for legitimate participants and the importance of building trust and maintaining community engagement.

Variations in HIV Prevention Coverage in Subpopulations of Australian Gay and Bisexual Men, 2017-2021: Implications for Reducing Inequities in the Combination Prevention Era.

Using repeated behavioural surveillance data collected from gay and bisexual men (GBM) across Australia, we assessed trends in HIV prevention coverage (the level of 'safe sex' achieved in the population by the use of effective prevention methods, including condoms, pre-exposure prophylaxis [PrEP] and having an undetectable viral load). We stratified these trends by age, country of birth/recency of arrival, sexual identity, and the proportion of gay residents in the participant's suburb. Among 25,865 participants with casual male partners, HIV prevention coverage increased from 69.8% in 2017 to 75.2% in 2021, lower than the UNAIDS target of 95%. Higher levels of coverage were achieved among older GBM (≥ 45 years), non-recently-arrived migrants, and in suburbs with ≥ 10% gay residents. The lowest levels of prevention coverage (and highest levels of HIV risk) were recorded among younger GBM (< 25 years) and bisexual and other-identified participants. Younger, recently-arrived, and bisexual GBM were the most likely to use condoms, while PrEP use was concentrated among gay men, 25-44-year-olds, and in suburbs with more gay residents. The use of undetectable viral load was most common among participants aged ≥ 45 years. Our analysis shows that high HIV prevention coverage can be achieved through a mixture of condom use, PrEP use, and undetectable viral load, or by emphasising PrEP use. In the Australian context, younger, bisexual and other-identified GBM should be prioritised for enhanced access to effective HIV prevention methods. We encourage other jurisdictions to assess the level of coverage achieved by combination prevention, and variations in uptake.

RESUMEN: Utilizando datos repetidos de vigilancia conductual recopilados de hombres homosexuales y bisexuales (GBM) en toda Australia, evaluamos las tendencias en la cobertura de la prevención del VIH (el nivel de "sexo seguro" logrado en la población mediante el uso de métodos de prevención eficaces, incluyendo condones, Profilaxis de Pre-Exposición al VIH [PrEP] y tener una carga viral indetectable). Estratificamos estas tendencias por edad, país de nacimiento/tiempo desde la llegada al país, identidad sexual y proporción de residentes homosexuales en el suburbio del participante. Entre 25.865 participantes con parejas masculinas ocasionales, la cobertura de prevención del VIH aumentó del 69,8% en 2017 al 75,2% en 2021, cifra inferior al objetivo de ONUSIDA del 95%. Se lograron niveles más altos de cobertura entre GBM de mayor edad (≥45 años), inmigrantes no llegados recientemente y en suburbios con ≥10% de residentes homosexuales. Los niveles más bajos de cobertura de prevención (y los niveles más altos de riesgo de VIH) se registraron entre los GBM más jóvenes (<25 años) y los participantes bisexuales y con otras identidades. Los GBM más jóvenes, recién llegados y bisexuales fueron los más propensos a usar condones, mientras que el uso de PrEP se concentró entre hombres homosexuales, de 25 a 44 años, y en los suburbios con más residentes homosexuales. El uso de carga viral indetectable fue más común entre los participantes de ≥45 años. Nuestro análisis demuestra que se puede lograr una alta cobertura de prevención del VIH mediante una combinación del uso de condón, uso de PrEP y carga viral indetectable, o enfatizando el uso de PrEP. En el contexto australiano, se debe dar prioridad a los GBM más jóvenes, bisexuales y con otras identidades para mejorar el acceso a métodos eficaces de prevención del VIH. Alentamos a otras jurisdicciones a evaluar el nivel de cobertura logrado mediante la prevención combinada y las variaciones en la adopción.

Mpox (monkeypox) knowledge, concern, willingness to change behaviour, and seek vaccination: results of a national cross-sectional survey.

BACKGROUND: In mid-2022, a global mpox (formerly 'monkeypox') outbreak affecting predominantly gay and bisexual men emerged in non-endemic countries. Australia had never previously recorded mpox cases and there was no prior research on knowledge or attitudes to mpox among gay and bisexual men across Australia. METHODS: We conducted a national, online cross-sectional survey between August 2022 and September 2022. Participants were recruited through community organisation promotions, online advertising, and direct email invitations. Eligible participants were gay, bisexual or queer; identified as male (cisgender or transgender) or non-binary; aged 16years or older; and lived in Australia. The main outcome measures were: knowledge and concern about mpox; recognition of mpox symptoms and transmission routes; vaccination history; acceptability of behavioural changes to reduce mpox risk, and willingness to be vaccinated. RESULTS: Of 2287 participants, most participants were male (2189/2287; 95.7%) and gay (1894/2287; 82.8%). Nearly all had heard about mpox (2255/2287; 98.6%), and the majority were concerned about acquiring it (1461/2287; 64.4%). Most of the 2268 participants not previously diagnosed with mpox correctly identified skin lesions (2087; 92%), rash (1977; 87.2%), and fever (1647; 72.6%) as potential symptoms, and prolonged and brief skin-to-skin contact as potential ways to acquire mpox (2124, 93.7%; and 1860, 82%, respectively). The most acceptable behavioural changes were reducing or avoiding attendance at sex parties (1494; 65.9%) and sex-on-premises venues (1503; 66.4%), and having fewer sexual partners (1466; 64.6%). Most unvaccinated and undiagnosed participants were willing to be vaccinated (1457/1733; 84.1%). CONCLUSIONS: People at risk of mpox should be supported to adopt acceptable risk reduction strategies during outbreaks and to seek vaccination.

Understanding how PrEP is made successful: Implementation science needs an evidence-making approach.

After a decade of oral HIV pre-exposure prophylaxis (PrEP), the next generation of PrEP is being anticipated, including long-acting pills, injections, and implants. The unevenness of international PrEP implementation is increasingly recognised, with successful rollout in some settings and failure in others. There is a need to better understand conditions of PrEP implementation, and its localised (and sometimes unanticipated) effects. Implementation science explores how contexts and health systems shape the successful translation of health interventions. In this essay, we consider how PrEP is evolving and argue for an 'evidence-making' approach in relation to evidence and intervention translations. This approach emphasises how both interventions and their implementation contexts are co-constituted and evolve together. Unsettling the assumed universality of an intervention's effects and potential in relation to its implementation contexts helps to harness the localised possibilities for what PrEP might become. As the next generation of PrEP offers renewed promise, we must explore how PrEP is put to use and made to work in relation to its evolving situations. We urge implementation science to consider implementation processes as 'evidence-making events' in which evidence, intervention and context evolve together.

Human Immune Cell Epigenomic Signatures in Response to Infectious Diseases and Chemical Exposures.

Variations in DNA methylation patterns in human tissues have been linked to various environmental exposures and infections. Here, we identified the DNA methylation signatures associated with multiple exposures in nine major immune cell types derived from peripheral blood mononuclear cells (PBMCs) at single-cell resolution. We performed methylome sequencing on 111,180 immune cells obtained from 112 individuals who were exposed to different viruses, bacteria, or chemicals. Our analysis revealed 790,662 differentially methylated regions (DMRs) associated with these exposures, which are mostly individual CpG sites. Additionally, we integrated methylation and ATAC-seq data from same samples and found strong correlations between the two modalities. However, the epigenomic remodeling in these two modalities are complementary. Finally, we identified the minimum set of DMRs that can predict exposures. Overall, our study provides the first comprehensive dataset of single immune cell methylation profiles, along with unique methylation biomarkers for various biological and chemical exposures.

Antibiotics online: digital pharmacy marketplaces and pastiche medicine.

The internet enables access to information and the purchasing of medical products of various quality and legality. Research and regulatory attention have focused on the trafficking of illicit substances, potential physical harms of pharmaceuticals, and possibilities like financial fraud. However, there is far less attention paid to antibiotics and other antimicrobials used to treat infections. With online pharmacies affording greater access, caution around antibiotic use is needed due to the increasing health risks of antimicrobial resistance (AMR). The COVID-19 pandemic has helped to normalise digital healthcare and contactless prescribing, amplifying the need for caution. Little is known of how antibiotics are consumed via digital pharmacy and implications for AMR prevention. To expand insight for AMR prevention policy in Australia and internationally, we use digital ethnographic methods to explore how digital pharmacies function in the context of health advice and policy related to AMR, commonly described as antimicrobial stewardship. We find that digital pharmacy marketplaces constitute 'pastiche medicine'. They curate access to pharmaceutical and information products that emulate biomedical authority combined with emphasis on the 'self-assembly' of healthcare. Pastiche medicine empowers the consumer but borrows biomedical expertise about antibiotics, untethering these goods from critical medicine information, and from AMR prevention strategies. We reflect on the implications of pastiche medicine for AMR policy, what the antibiotics case contributes to wider critical scholarship on digital pharmacy, and how medical humanities research might consider researching online consumption in future.

Understanding the health care needs of transgender and gender diverse people engaging with rural Australian sexual health centres: a qualitative interview study.

BACKGROUND: Although there is a presumption that LGBTQ+ people living in rural Australia will have poorer health outcomes than those living in metropolitan areas, minimal research has focused specifically on the perspectives of transgender and gender diverse (henceforth referred to as 'trans') people living in these regions. The purpose of this study was to understand what health and wellbeing means to trans people in a regional or rural community and identify their health needs and experiences. METHODS: A total of 21 trans people were recruited through two regional sexual health centres (SHC) and interviewed between April and August 2021. Data were analysed via reflexive thematic analysis. This paper focuses on participants' accounts of health and wellbeing regarding gender affirmation, the experience of rural living, respectful holistic care, safety in rural communities, isolation, loneliness, and employment. RESULTS: The experience of living rurally can have both positive and negative impacts on the experiences of trans people. Participants reported experiences of stigma and discrimination, reduced employment opportunities and limited social interactions, which led to feelings of isolation and loneliness; however, they also reported high quality of care, particularly with the specific SHCs which supported this research. CONCLUSION: Living rurally can impact both positively and negatively on the health and wellbeing of trans peoples, and the experiences of living in this environment are diverse. Our findings challenge the perception that rural trans people experience only poor health outcomes and shows the difference that key health services such as SHCs can make in supporting trans health.

Dosing practices made mundane: Enacting HIV pre-exposure prophylaxis adherence in domestic routines.

Maintaining routines of medication dosing requires effort amidst the variabilities of everyday life. This article offers a sociomaterial analysis of how the oral HIV prevention regimen, pre-exposure prophylaxis (PrEP), is put to use and made to work, including in situations which disrupt or complicate dosing regimes. Other than a daily pill, PrEP can be taken less frequently based on anticipated sexual activity and HIV risk, including 'on-demand' and 'periodic' dosing. Drawing on 40 interviews with PrEP users in Australia in 2022, we explore PrEP and its dosing as features of assemblages in which bodies, routines, desires, material objects and the home environment interact. Dosing emerges as a practice of coordination involving dosette boxes, blister packs, alarms, partners, pets, planning sex, routines and domestic space, and as an effect of experimentations with timing to suit life circumstances and manage side effects. Dosing is materialised in the mundane; a practice that is made to work, as well as domesticated, in its situations. Although there are no 'simple' solutions to adherence, our analysis offers practical insights into how routine, planning and experimentation come together to capacitate PrEP to work in people's lives, in sometimes unexpected ways, including through adaptations of PrEP dosing.

Advancing Dialogue About Consent and Molecular HIV Surveillance in the United States: Four Proposals Following a Federal Advisory Panel's Call for Major Reforms.

Policy Points Molecular HIV surveillance and cluster detection and response (MHS/CDR) programs have been a core public health activity in the United States since 2018 and are the "fourth pillar" of the Ending the HIV Epidemic initiative launched in 2019. MHS/CDR has caused controversy, including calls for a moratorium from networks of people living with HIV. In October 2022, the Presidential Advisory Council on HIV/AIDS (PACHA) adopted a resolution calling for major reforms. We analyze the policy landscape and present four proposals to federal stakeholders pertaining to PACHA's recommendations about incorporating opt-outs and plain-language notifications into MHS/CDR programs.

Analysis of metatranscriptomic methods to enable wastewater-based biosurveillance of all infectious diseases.

Introduction: Wastewater-based surveillance emerged during the COVID-19 pandemic as an efficient way to quickly screen large populations, monitor infectious disease transmission over time, and identify whether more virulent strains are becoming more prevalent in the region without burdening the health care system with individualized testing. Ohio was one of the first states to implement wastewater monitoring through its Ohio Coronavirus Wastewater Monitoring Network (OCWMN), originally tracking the prevalence of COVID-19 by quantitative qPCR from over 67 sites across the state. The OCWMN evolved along with the pandemic to include sequencing the SARS-CoV-2 genome to assess variants of concern circulating within the population. As the pandemic wanes, networks such as OCWMN can be expanded to monitor other infectious diseases and outbreaks of interest to the health department to reduce the burden of communicable diseases. However, most surveillance still utilizes qPCR based diagnostic tests for individual pathogens, which is hard to scale for surveillance of multiple pathogens. Methods: Here we have tested several genomic methods, both targeted and untargeted, for wastewater-based biosurveillance to find the most efficient procedure to detect and track trends in reportable infectious diseases and outbreaks of known pathogens as well as potentially novel pathogens or variants on the rise in our communities. RNA extracts from the OCWMN were provided weekly from 10 sites for 6 weeks. Total RNA was sequenced from the samples on the Illumina NextSeq and on the MinION to identify pathogens present. The MinION long read platform was also used to sequence SARS-CoV-2 with the goal of reducing the complexity of variant calling in mixed populations as occurs with short Illumina reads. Finally, a targeted hybridization approach was tested for compatibility with wastewater RNA samples. Results and discussion: The data analyzed here provides a baseline assessment that demonstrates that wastewater is a rich resource for infectious disease epidemiology and identifies technology gaps and potential solutions to enable this resource to be used by public health laboratories to monitor the infectious disease landscape of the regions they serve.

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.

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.

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.