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Love Letters to Lichen
Get PDFThe T. Rudzinskaitė Memorial Amateur Lichenologists Society was founded in 2018 by continuing co-chairs Tessa Zettel and Dr. Sumugan Sivanesan at Nida Art Colony on the Curonian Spit, Lithuania, eighth Eco-zone. Named in honour of Tekle Rudzinskaitė, Lithuania’s foremost amateur lichenologist, after 73 years the Society remains dedicated to promoting the love and study of lichen in this galaxy and beyond. Its steadily growing membership of multispecies co-constituents participate in myriad curious forms of research, happenings and publications, collectively exploring speculative narratives and rituals around extinction that take lichen as guide, teacher, poet and friend. In 2091 the liveliest of its many enthusiast-led working groups are the emergent Crystal Radio Lab, the Metta Verse Mutual Aid Space Program (with subsidiary SpaceTime Fab Lab) and the Therolinguistics Reading Group. Periodically the Society publishes a bulletin—in whatever ready context is amenable—updating members on its latest movements; what follows is the 2089 edition, regrettably somewhat delayed. Please click on the links between the written pieces in the newsletter to see the recordings.  
Seeing Within, Without, Across and Between: Stories from Cross-Cultural Photographic Exchange
Get PDFThis paper discusses letters and photo-stories as sites for making strange our familiar relationships with the non-human world, through considering images and methods from the action-research project ‘Portraits of Change’, which explored environmental behaviour change and human/non-human relations through participatory visual dialogue between urban youth in Bangladesh, Australia and China. In particular, it focuses on various themes arising in the exchange of letters and photo-stories created by students through workshops in Dhaka and Melbourne, and how these can both reinforce and challenge our ways of viewing the non-human world. These themes, including health, aesthetics and visuality, also highlighted differing environmental perspectives between youth in majority and minority worlds. The complexity of the multi-sited action-research engagements require methodological adaptations in both the participatory design of the workshops, and analysis of their resulting visual artifacts
Review of Sarah Green, Sexual Restraint and Aesthetic Experience in Victorian Literary Decadence
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VCCC Data Driven Research Hub: a primary care focused linked data resource for health services research in Victoria, Australia
No full textBackground: Linked data resources are becoming increasingly important for cancer services research since patients interact with the health system using many different health services, each with their own data collections. Here we introduce the VCCC Data Driven Research Hub (DDRH), a linked data resource incorporating primary care, hospital and cancer registry data from Victoria. Primary care is the first point of contact for many patients’ interactions with the health system so such a resource fills an important gap in clinical data science research infrastructure.
Aims: To provide researchers with an understanding of the DDRH and describe the data sources that it incorporated and how they correspond to patients’ journey of care.
Methods: Descriptive analysis on eight different linked data sources, describing some main features of the data, including data quality and representativeness, as well as characteristics of patient cohorts.
Results: To the best of our knowledge this is the largest linked primary care data resource in Australia. With over 3 million patients included and covering 20 years of data, as well as unified governance and ethics processes, we believe this will be a useful resource for researchers and analysts interested in understanding Victorian patients’ utilisation of health services.
Conclusions: Similar linked data resources exist in other jurisdictions and we demonstrate the value of such a resource in Australia. Projects making use of this data are underway including in the study of: diagnostic intervals; primary care blood tests; and end of life care
The ethics of sextech – is design justice compatible with market demands?
No full textBackground: While many sextech projects involve researchers, to date these partnerships have primarily focused on the biomedical or sexological aspects of sexuality and tech use. This paper explores sociotechnical insights drawn from an online 'public interest sextech' research hackathon, which featured presentations from representatives of marginalised communities disproportionally impacted by the collection, regulation, aggregation and commercialisation of sexual and/or intimate data – including Aboriginal and Torres Strait Islander people, people living with HIV, people with disabilities, trans people and sex workers.
Aims: Hackathon participants (including sexuality educators, design professionals and technologists) were asked to consider how the values of designers become embedded in the technologies; and invited to create speculative designs for innovative sextech informed by design justice approaches (Costanza-Chock 2020).
Methods: Hackathons typically involve a series of intensive design sprints. We followed this model, supporting participants via expert presentations, and access to industry mentors over a 3-day period. Participants then ‘pitched’ their design to judges with broad expertise in sextech and public interest technologies. They also shared reflections on speculative sextech design (and the broader hackathon experience) in facilitated small group sessions.
Results: Throughout the hackathon, panellists (and activist participants) focused on local, collective approaches – focusing on cultural protocols, counter-surveillance and building community partnerships. In contrast, market-focused participants prioritised opportunities for commercialisation and global scaleability.
Conclusions: While co-design is a core element of ethical and inclusive practice, there are significant tensions between the market demands of start-up tech cultures, and the more collective approaches favoured by stakeholders from marginalised sexual communities
How does collaboration support sexual health organisations to successfully navigate Meta’s content moderation policies?
No full textBackground: Since the start of the COVID-19 pandemic, sexual health organisations increasingly use social media platforms (particularly Instagram) to distribute sexual health content to young people. However, Meta’s content moderation policies severely restrict the distribution of ‘sexual’ content that is ‘sexual’, which restricts the ability of sexual health organisations to distribute content that reflects peoples’ lived experiences.
Aims: This study examines how sexual health organisations resist and creatively navigate Meta’s content moderation policies to ensure that their distributed content reaches young people.
Methods: This exploratory study involved semi-structured interviews with producers of best-practice digital sexual health promotion employed by 12 sexual health organisations in Australia and the United Kingdom. Interviews focused on understanding professional experiences of producing and distributing social media content. Themes were developed using abductive analysis.
Results: Many of the sexual health organisations collaborated with content creators and organisations, who hold similar values to that organisation. These relationships are used to distribute content to new networks, prioritise content within Instagram’s algorithm and share experiences of content moderation. Collaboration supports organisations to better understand the nuances of the algorithm and produce content that more effectively flies under the radar of content moderation.
Conclusions: While Meta’s content moderation policies restrict the type of sexual health content shared, sexual health organisations use collaboration to increase their visibility with young people on Instagram. These strategies can be used to increase the visibility of digital health content, that resonates with young people’s lived experiences, across a variety of social media platforms
The InsideOut eClinic: the development and public release of a self-led, self-signup eTherapy platform for eating disorders
No full textDigitally delivered guided self-help programs for eating disorders can reduce treatment barriers like cost, stigma, geography, and availability of clinicians. Digital eating disorder treatments also provide a unique opportunity for innovative enhancements such as self-monitoring tools, clinician dashboards, clinician pairing/monitoring and supported self-help options.
Binge Eating eTherapy (BEeT) was one of the first online CBT programs for eating disorders in Australia. Clinical trials of ‘BEeT’ and a re-formatted four-week version of ‘Brief BEeT’ showed promising baseline to post-treatment decreases in objective binge eating frequency. After developing and evaluating these programs, InsideOut Institute has built an eating disorder digital therapy treatment platform (‘the InsideOut eClinic’), which allows us to deliver eTherapies and self-monitoring.
The InsideOut eClinic enables the authoring and delivery of new eTherapies without further digital development. The self-monitoring capabilities allow for food, thought, and behaviour monitoring, goal setting, and Cognitive Behavioural Therapy tools such as exposure and thought challenges, also available as a mobile application. The platform allows for further innovative therapeutic options including the connection of users to clinicians, clinical monitoring or support and patient led or guided experiences.
This presentation will explore the conversion of digital tools from research studies into operationalised, publicly available treatments, the building of a sustainable and considered platform that survives outside a particular grant or study, and the use of codesign and research learnings to inform continuous improvement valuing lived and living experience voices
Using Incrementalism and Legitimacy to Ensure Ethical Use of Digital Health Data to Provide Accelerated Access to Medicines
No full textBackground: Provisional marketing approval and funding schemes allow medicines to be approved or funded on the basis of earlier data, with post-market data collection—including use of digital health data—to confirm their safety, effectiveness and cost-effectiveness. Ethical and responsible use of digital health data is necessary for both initiatives.
Aims: To explore the beliefs of patients and physicians from Sydney, NSW regarding post-market data collection, including of digital health data, as a component of accelerated access.
Methods: Semi-structured interviews were conducted with 18 Australian physicians and 13 patients and patient advocates; two focus groups were conducted with patients. Both patients and consumers were from medical specialties and disease areas in which accelerated access is most actively discussed. These were transcribed verbatim and analysed thematically.
Results: There was significant diversity in stakeholder opinion. Although all acknowledged potential risks and benefits of increased reliance on post-market collection and use of digital health data, they disagreed on their magnitude and extent and how these should be balanced in both policy formation and clinical practice. Robust data collection, coupled with swift and decisive action by regulators and funders, were seen as necessary to address risks, but not all participants were confident this could be achieved.
Conclusions: Stakeholder analysis shows a range of reasonable views on how to respond to calls for increased reliance on post-market collection and use of digital health data as part of accelerated access. Incremental policy change can maintain the protections of current systems while providing faster access to new medicines where this is needed most. However, not all substantive positions can be accommodated. A focus on fair procedures will increase legitimacy and acceptability of decisions about accelerated access to medicines. I offer a number of practical suggestions to achieve both legitimate and incremental policy making in regards use of post-market collection and use of digital health data in decisions about access to medicines
‘I'm glad my bub has just weaned so I don't have to make that decision!’: Preliminary results from an online social listening study on breastfeeding and COVID-19 information
No full textBackground: The COVID-19 pandemic has dominated global attention since early 2020 and the approval of vaccines was a welcome milestone. The exclusion of breastfeeding and pregnant women from clinical trials meant evidence-based advice for this group lagged and has at times been contradictory and confusing. Breastfeeding is an important public health issue and health professionals were concerned that this confusion could impact poorly on breastfeeding outcomes.
Aim: This study aimed to understand breastfeeding-related COVID-19 information sharing and reactions on social media during the Australian vaccine roll-out.
Methods: The CrowdTangle platform was used to source data. Posts were categorised to both intent and source, and mapped with a timeline of related events and announcements. Descriptive analysis was used to understand data distribution patterns and qualitative analysis is under way.
Results: A total of 945 posts were included for analysis. Interactions per post ranged from 0-6,500. Vaccine-related posts were the highest in number and increased over time. Non-profit organisations shared the highest number of posts (n=241), but interactions per posts were highest from personal accounts. Peaks in posts and interactions mapped to key announcements and pandemic events. Preliminary qualitative analysis shows changes in intent over time with full analysis currently underway