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.

AMR survivors? Chronic living with antimicrobial resistant infections.

Behind the statistics forecasting millions of deaths associated with antimicrobial resistance (AMR) is an even greater burden of morbidity leaving many people with long-term chronic illnesses and disability. Despite growing recognition of the importance of inter-sectoral and inter-disciplinary knowledge in forming responses to address this global health threat, there remains a paucity of social science research to understand the social burdens of AMR. In this qualitative study we explore the experiences of people living with chronic AMR infections, their interactions with health providers and therapeutic quests for care, and the effects upon their lives and that of their families and caregivers. Our analysis reveals that the resistant infections impacted not only the physical health but also the mental health of the sufferers and their caregivers, causing major disruptions to their social and work lives. Most undertook arduous treatment regimes - of powerful antibiotics with debilitating side effects, combined a range of other complementary and alternate therapies, including travel to seek treatment overseas. Further, we question the notion of 'AMR survivorship' currently being promoted as part of a public education campaign by the World Health Organisation and whether people with the diverse AMR experience really self-identify as 'survivors' of a biosocial group.

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.

'Willy nilly' doctors, bad patients, and resistant bodies in general public explanations of antimicrobial resistance.

Increased public engagement is a feature of policy and communications focussed on the reduction of antimicrobial resistance. Explaining antimicrobial resistance for general publics has proven difficult and they continue to endorse apparently mistaken knowledge, including the conflation of antimicrobial resistance with the notion of the resistant body. We interviewed members of the general public in Melbourne, Australia, to explore explanatory models for antimicrobial resistance and shed light on the persistence of the resistant body assumption and related concepts. In the face of AMR's complexity and the portended antibiotic apocalypse, publics rely on a heavily inscribed understanding of the body defending itself against microbes. Publics also read antibiotic misuse and overuse messages as the responsibility of other patients and medical practitioners, and not themselves. Significantly, the scientific world view that has created expert knowledge about AMR hails publics in ways that discredits them and limits their capacity to take action. Increased engagement with publics will be required to ensure that collaborative and sustainable AMR approaches are fashioned for the future.

Beyond resistance: social factors in the general public response to pandemic influenza.

BACKGROUND: Influencing the general public response to pandemics is a public health priority. There is a prevailing view, however, that the general public is resistant to communications on pandemic influenza and that behavioural responses to the 2009/10 H1N1 pandemic were not sufficient. Using qualitative methods, this paper investigates how members of the general public respond to pandemic influenza and the hygiene, social isolation and other measures proposed by public health. Going beyond the commonly deployed notion that the general public is resistant to public health communications, this paper examines how health individualism, gender and real world constraints enable and limit individual action. METHODS: In-depth interviews (n = 57) and focus groups (ten focus groups; 59 individuals) were conducted with community samples in Melbourne, Sydney and Glasgow. Participants were selected according to maximum variation sampling using purposive criteria, including: 1) pregnancy in 2009/2010; 2) chronic illness; 3) aged 70 years and over; 4) no disclosed health problems. Verbatim transcripts were subjected to inductive, thematic analysis. RESULTS: Respondents did not express resistance to public health communications, but gave insight into how they interpreted and implemented guidance. An individualistic approach to pandemic risk predominated. The uptake of hygiene, social isolation and vaccine strategies was constrained by seeing oneself 'at risk' but not 'a risk' to others. Gender norms shape how members of the general public enact hygiene and social isolation. Other challenges pertained to over-reliance on perceived remoteness from risk, expectation of recovery from infection and practical constraints on the uptake of vaccination. CONCLUSIONS: Overall, respondents were engaged with public health advice regarding pandemic influenza, indicating that the idea of public resistance has limited explanatory power. Public communications are endorsed, but challenges persist. Individualistic approaches to pandemic risk inhibit acting for the benefit of others and may deepen divisions in the community according to health status. Public communications on pandemics are mediated by gender norms that may overburden women and limit the action of men. Social research on the public response to pandemics needs to focus on the social structures and real world settings and relationships that shape the action of individuals.

Biography, pandemic time and risk: Pregnant women reflecting on their experiences of the 2009 influenza pandemic.

During the 2009 H1N1 pandemic, it was identified that women in the third trimester of pregnancy were particularly at risk of serious respiratory distress. At-risk women were advised to seek vaccination, avoid contact with anyone unwell, maintain hygiene routines and stop smoking. We examine this situation of emergent and intense risk produced at the intersection of individual biography and the historical event of a public health emergency. We examine how pregnant women took account of risk, how they negotiated incomplete and at times contradictory advice and shaped courses of action that assisted them to manage the emerging terrain of pandemic threat. Public health risk management advice was endorsed, although choosing vaccination was fraught. Social distancing, too, was seen as a valuable risk moderation strategy. However, time, and specifically the intersection of individual pregnancy timelines with the pandemic's timeline, was also seen as an important risk management resource. The implications of this mix of sanctioned and temporal risk management practices are discussed.

Understanding the biopsychosocial aspects of HIV disclosure among HIV-positive gay men in Scotland.

This study presents an interpretative phenomenological analysis of the experiential accounts of HIV-positive gay men. Participants took part in open-ended interviews. Three key-related recurrent themes are presented: 'Disclosure, deliberation and the abject other'; 'Disclosure, care and the valued other' and 'Disclosure and intimate citizenship'. These highlight the complex, situated and mindful ways in which disclosure occurs. They stand in contrast to the understandings of HIV status disclosure as a 'health behaviour' deracinated from its social, relational and emotional dimensions. We explore the findings in relation to contemporary HIV prevention (with its increasing biomedical slant) and in relation to a biopsychosocial framework.