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

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

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

Prescribing as affective clinical practice: Transformations in sexual health consultations through HIV pre-exposure prophylaxis

New medicines can transform routines and priorities in clinical practice, but how do clinicians think and feel about these changes, and how does it affect their work? In Australia, the HIV prevention regimen pre-exposure prophylaxis (PrEP) has been rapidly rolled out, transforming the sexual cultures and practices of users, but less attention has been given to the ways PrEP has reconfigured clinical practice. This paper draws on 28 qualitative semi-structured interviews conducted between 2019 and 2020 with PrEP-providing doctors and nurses in Australia to consider how they have affectively engaged with PrEP and put it into practice. Through a reflexive thematic analysis, we explore how clinicians adapted to PrEP, how the field of HIV prevention has been transformed, and how these developments have changed how clinicians approach patients. While the introduction of PrEP was initially received with uncertainty and shock, clinicians described PrEP as enjoyable to prescribe, and better aligned with the moral duties of sexual health consultations than existing HIV prevention strategies like condoms. Through approaching clinical work as an ‘affective practice’, we argue for attending not only to how new interventions change expectations and practices, but also how these changes are felt and valued by clinicians

Tasmanian healthcare professionals' & students' capacity for LGBTI + inclusive care: A qualitative inquiry

The health disparities and care needs of lesbian, gay, bisexual, transgender and intersex (LGBTI+) patients are becoming well known. However, healthcare practitioners (HCPs) and medical students across the Global North report limited understanding of this population and express concern about their capacity to meet the needs of LGBTI + patients. To address these gaps in literature and practice, this study draws on qualitative interviews with 12 clinicians and five health professional students exploring their understandings and approaches to LGBTI + inclusive practice in Tasmania, Australia. Through a reflexive thematic analysis, we identified that both practicing clinicians and students did not believe that their training adequately prepared them to treat LGBTI + patients. Other key barriers included reduced awareness of LGBTI + community needs due to the lack of exposure to LGBTI + patients and unfamiliarity with appropriate referral pathways in the regional Tasmanian context. Conversely, factors enabling provision of LGBTI + inclusive care included prior experience working with LGBTI + patients and establishing a network of supportive colleagues and local services. Participants who identified as LGBTI + themselves saw their personal experiences as a strength in supporting LGBTI + patients. While awareness of LGBTI + inclusive health practice is increasing, Tasmanian practitioners report insufficient training and practical difficulties with referral as key challenges

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

Clusters of alcohol abstainers and drinkers incorporating motives against drinking: a random survey of 18 to 34 year olds in four cities in four different continents

Objective: The aim of this analysis was to identify alcohol consumption clusters for adolescents and early adults according to attitudes to drinking, motivations against drinking and perceptions associated with alcohol. Method: Interviews were undertaken with people aged 18–34 years old living in four cities in different regions of the world. Multistage random sampling was consistent across the four cities (Ilorin (Nigeria), Wuhan (China), Montevideo (Uruguay) and Moscow (Russia)). The questionnaire was forward and back translated into relevant languages and face-to-face interviewing undertaken. The data were weighted to the population of each city. In total 6235 structured interviews were undertaken (1391 in Ilorin, 1600 in Montevideo, 1604 in Moscow and 1640 in Wuhan). Questions regarding motivation against alcohol consumption (14 items), assessing perceptions (3 items) and attitudes to drinking in certain situations (8 items) were asked of all respondents including abstainers. Factor analysis was initially undertaken to identify highly related correlated variables. Results: Cluster analysis provided a variety of clusters (Ilorin (3 clusters), Montevideo (5), Moscow (4) and Wuhan (4)). At least one cluster in each city was dominated by abstainers and another by heavy episodic drinkers. Variations by city and alcohol consumption patterns existed in regards to variables included. Conclusion: This analysis detailed the city specific motivations against drinking alcohol, and the attitudes towards alcohol consumption. Differences highlight the influence of country/city specific culture, customs, laws, societal norms and traditions

Open science, COVID-19, and the news: Exploring controversies in the circulation of early SARS-CoV-2 genomic epidemiology research

Some early English language news coverage of COVID-19 epidemiology focused on studies that examined how SARS-CoV-2 (the coronavirus that causes COVID-19) was evolving at the genetic level. The use of phylogenetic methods to analyse pathogen genetic sequence data to understand disease dynamics is called ‘molecular’ or ‘genomic’ epidemiology. Many research groups in this subfield utilise open science practices, which can involve the circulation of early unreviewed findings on publicly-accessible venues online. From March to May 2020, media outlets covered early SARS-CoV-2 genomic studies that claimed to have discovered types of SARS-CoV-2 that had mutated to be more transmissible. We use methods from Science and Technology Studies (STS) to examine three cumulative cases in which unripe facts about SARS-CoV-2 genomics moved out of scientific publics and into mainstream news. The three cases are: (1) ‘A More “Aggressive” Strain of SARS-CoV-2?’, (2) ‘Eight SARS-CoV-2 Strains?’, and (3) ‘A “More Contagious,” “Mutant” Strain?’ In each case, findings were called into question and reporters’ framing was overly sensational. We interpret the COVID-19 pandemic as a ‘stress-test’ for open science practices, and argue that it is important for stakeholders to understand changes in scientific publication and dissemination processes in the wake of the pandemic

Challenges of providing HIV pre-exposure prophylaxis across Australian clinics: qualitative insights of clinicians

Background: HIV pre-exposure prophylaxis (PrEP) has been rapidly implemented in Australia, initially through restricted access in demonstration studies, and then through prescribing across sexual health clinics and general practice settings. In 2018, PrEP was publicly subsidised for people with Medicare (universal health insurance for citizens, permanent residents and those from countries with reciprocal arrangements). There is little research examining the experiences of PrEP providers in Australia, and existing research has been primarily conducted before public subsidy. Methods: In this qualitative study, we examine the challenges that have emerged for PrEP-providing clinicians after public subsidy for PrEP was introduced. We conducted 28 semi-structured interviews in 2019-20 with PrEP providers in two Australian states, and analysed data thematically. Participants included general practitioners (GPs), sexual health nurses and sexual health physicians. Results: Sexual health services have been reconfigured to meet changing patient demand, with an emphasis on ensuring equitable financial access to PrEP. Restrictions to nurse-led PrEP frustrated some participants, given that nurses had demonstrated competence during trials. GPs were believed to be less effective at prescribing PrEP, but GP participants themselves indicated that PrEP was an easy intervention, but difficult to integrate into general practice. Participants expressed discomfort with on-demand PrEP. Conclusions: Our findings indicate that supporting ways for patients without Medicare to access PrEP inexpensively, advocating for nurse-led PrEP, and developing guidelines adapted to general practice consultations could ensure that PrEP is delivered more effectively and equitably. Additionally, PrEP providers require encouragement to build confidence in providing on-demand PrEP