Using World Cafés to engage an Australian culturally and linguistically diverse community around human papillomavirus vaccination.

INTRODUCTION: Internationally, cultural factors are associated with vaccine uptake and completion in ethnic minority communities. Whilst Australia has achieved high human papillomavirus (HPV) vaccination, little is known about how culture or ethnicity influences HPV vaccination engagement. To address these gaps, we partnered with our Local Health District to explore how one culturally and linguistically diverse (CALD) community engages with school and HPV vaccination. METHODS: We adapted a participatory research method (the World Café) to engage one local CALD community-the Macedonian community (Our bi-cultural researcher and participants preferred the term 'Macedonia' rather than The Republic of North Macedonia as outlined in the 2018 Prespa agreement) in New South Wales (Australia)-to discuss HPV and school vaccination. Our qualitative analysis combined deductive codes taken from the Tailoring Immunization Programme framework, inductive codes guided by narrative inquiry (temporality, sociality and place) and previously known vaccination 'trust' frameworks. RESULTS: In late 2019, 31 local Macedonian community members were purposely recruited for two World Cafés (n = 15 mothers/grandmothers and n = 16 young adults). Our themes reveal a community narrative grounded in historical vaccine experiences, family views on vaccination and a general trust in schools. Participants collectively discussed how 'increasing knowledge' and 'tailoring health communications' could strengthen community vaccine decision-making. CONCLUSION: This study demonstrates how research partnerships and participatory methods can be applied in CALD community settings to research engagement with school and HPV vaccination. Our World Café dialogues highlight a positive narrative about vaccines, where community vaccination behaviours were built on multilayer trust relationships despite low vaccine knowledge. Our findings further knowledge around 'public trust' in school vaccination, highlighting the importance of existing (or missing) trust relationships when tailoring vaccine communication to local CALD communities. PATIENT OR PUBLIC CONTRIBUTION: Participants who took part in the World Cafes were all local Macedonian community parents or young adults who have been or will be exposed to the health services offered by school-based HPV vaccination. Thus, all the data collected came from their personal experiences with the school vaccination programme, or how they expect to participate in the programme. To ensure our study design was culturally appropriate and tailored to the Macedonian community, we engaged with the relevant local health stakeholders (the bi-cultural Multicultural Health Officer and Multicultural Health Service Manager Programme Director) to adapt and refine the World Café method for this context and setting. Our local health stakeholders also reviewed our preliminary findings, assisted with data interpretation and participated in manuscript editing.

Sharing administrative health data with private industry: A report on two citizens' juries.

BACKGROUND: There is good evidence of both community support for sharing public sector administrative health data in the public interest and concern about data security, misuse and loss of control over health information, particularly if private sector organizations are the data recipients. To date, there is little research describing the perspectives of informed community members on private sector use of public health data and, particularly, on the conditions under which that use might be justified. METHODS: Two citizens' juries were held in February 2020 in two locations close to Sydney, Australia. Jurors considered the charge: 'Under what circumstances is it permissible for governments to share health data with private industry for research and development?' RESULTS: All jurors, bar one, in principle supported sharing government administrative health data with private industry for research and development. The support was conditional and the juries' recommendations specifying these conditions related closely to the concerns they identified in deliberation. CONCLUSION: The outcomes of the deliberative processes suggest that informed Australian citizens are willing to accept sharing their administrative health data, including with private industry, providing the intended purpose is clearly of public benefit, sharing occurs responsibly in a framework of accountability, and the data are securely held. PATIENT AND PUBLIC CONTRIBUTION: The design of the jury was guided by an Advisory Group including representatives from a health consumer organization. The jurors themselves were selected to be descriptively representative of their communities and with independent facilitation wrote the recommendations.

The representation of public values in health technology assessment to inform funding decisions: the case of Australia's national funding bodies.

Over the past few years, there has been an increasing recognition of the value of public involvement in health technology assessment (HTA) to ensure the legitimacy and fairness of public funding decisions [Street J, Stafinski T, Lopes E, Menon D. Defining the role of the public in Health Technology Assessment (HTA) and HTA-informed decision-making processes. Int J Technol Assess Health Care. 2020;36:87-95]. However, important challenges remain, in particular, how to reorient HTA to reflect public priorities. In a recent international survey of thirty HTA agencies conducted by the International Network of Agencies for HTA (INAHTA), public engagement in HTA was listed as one of the "Top 10" challenges for HTA agencies [O'Rourke B, Werko SS, Merlin T, Huang LY, Schuller T. The "Top 10" challenges for health technology assessment: INAHTA viewpoint. Int J Technol Assess. 2020;36:1-4].Historically, Australia has been at the forefront of the application of HTA for assessing the effectiveness and cost-effectiveness of new health technologies to inform public funding decisions. However, current HTA processes in Australia lack meaningful public inputs. Using Australia as an example, we describe this important limitation and discuss the potential impact of this gap on the health system and future directions.

Sharing Government Health Data With the Private Sector: Community Attitudes Survey.

BACKGROUND: The use of government health data for secondary purposes, such as monitoring the quality of hospital services, researching the health needs of populations, and testing how well new treatments work, is increasing. This increase in the secondary uses of health data has led to increased interest in what the public thinks about data sharing, in particular, the possibilities of sharing with the private sector for research and development. Although international evidence demonstrates broad public support for the secondary use of health data, this support does not extend to sharing health data with the private sector. If governments intend to share health data with the private sector, knowing what the public thinks will be important. This paper reports a national survey to explore public attitudes in Australia toward sharing health data with private companies for research on and development of therapeutic drugs and medical devices. OBJECTIVE: This study aims to explore public attitudes in Australia toward sharing government health data with the private sector. METHODS: A web-based survey tool was developed to assess attitudes about sharing government health data with the private sector. A market research company was employed to administer the web-based survey in June 2019. RESULTS: The survey was completed by 2537 individuals residing in Australia. Between 51.8% and 57.98% of all participants were willing to share their data, with slightly fewer in favor of sharing to improve health services (51.99%) and a slightly higher proportion in favor of sharing for research and development (57.98%). There was a preference for opt-in consent (53.44%) and broad support for placing conditions on sharing health information with private companies (62% to 91.99%). Wide variability was also observed in participants' views about the extent to which the private sector could be trusted and how well they would behave if entrusted with people's health information. In their qualitative responses, the participants noted concerns about private sector corporate interests, corruption, and profit making and expressed doubt about the Australian government's capacity to manage data sharing safely. The percentages presented are adjusted against the Australian population. CONCLUSIONS: This nationally representative survey provides preliminary evidence that Australians are uncertain about sharing their health data with the private sector. Although just over half of all the respondents supported sharing health data with the private sector, there was also strong support for strict conditions on sharing data and for opt-in consent and significant concerns about how well the private sector would manage government health data. Addressing public concern about sharing government health data with the private sector will require more and better engagement to build community understanding about how agencies can collect, share, protect, and use their personal data.

The rationale and design of public involvement in health-funding decision making: focus groups with the Canadian public.

BACKGROUND: Worldwide, governments employ health technology assessment (HTA) in healthcare funding decision making. Requests to include public perspectives in this are increasing, with the idea being that the public can identify social values to guide policy development, increasing the transparency and accountability of government decision making. OBJECTIVE: To understand the perspectives of the Canadian public on the rationale and design of public involvement in HTA. DESIGN: A demographically representative sample of residents of a Canadian province was selected to take part in two sets of two focus groups (sixteen people for the first set and twenty for the second set). RESULTS: Participants were suspicious of the interests driving various stakeholders involved in HTA. They saw the public as uniquely impartial though also lacking knowledge about health technologies. Participants were also suspicious of personal biases and commended mechanisms to reduce their impact. Participants suggested various involvement methods, such as focus groups, citizens' juries and surveys, noting advantages and disadvantages belonging to each and commending a combination. DISCUSSION AND CONCLUSIONS: We identified a lack of public understanding of how decisions are made and distrust concerning whose interests and values are being considered. Public involvement was seen as a way of providing information to the public and ascertaining their views and values. Participants suggested that public involvement should employ a mixed-methods strategy to support informed debate and participation of a large number of people.

Defining the role of the public in Health Technology Assessment (HTA) and HTA-informed decision-making processes.

OBJECTIVES: The terminology used to describe community participation in Health Technology Assessment (HTA) is contested and frequently confusing. The terms patients, consumers, public, lay members, customers, users, citizens, and others have been variously used, sometimes interchangeably. Clarity in the use of terms and goals for including the different groups is needed to mitigate existing inconsistencies in the application of patient and public involvement (PPI) across HTA processes around the world. METHODS: We drew from a range of literature sources in order to conceptualize (i) an operational definition for the "public" and other stakeholders in the context of HTA and (ii) possible goals for their involvement. Draft definitions were tested and refined in an iterative consensus-building process with stakeholders from around the world. RESULTS: The goals, terminology, interests, and roles for PPI in HTA processes were clarified. The research provides rationales for why the role of the public should be distinguished from that of patients, their families, and caregivers. A definition for the public in the context of HTA was developed: A community member who holds the public interest and has no commercial, personal, or professional interest in the HTA process. CONCLUSIONS: There are two distinct aspects to the interests held by the public which should be explicitly included in the HTA process: the first lies in ensuring democratic accountability and the second in recognising the importance of including public values in decision making.

Why do the public support or oppose obesity prevention regulations? Results from a South Australian population survey.

ISSUE ADDRESSED: Australian policymakers have acknowledged that implementing obesity prevention regulations is likely to be facilitated or hindered by public opinion. Accordingly, we investigated public views about possible regulations. METHODS: Cross-sectional survey of 2732 persons, designed to be representative of South Australians aged 15 years and over. Questions examined views about four obesity prevention regulations (mandatory front-of-pack nutrition labelling for packaged foods; zoning restrictions to prohibit fast food outlets near schools; taxes on unhealthy high fat foods; and taxes on sugar-sweetened beverages). Levels of support (Likert scale) for each intervention and reasons for support/opposition were ascertained. RESULTS: Views about the regulations were mixed: support was highest for mandatory nutrition labelling (90%) and lowest for taxes (40%-42%). High levels of support for labelling were generally underpinned by a belief that this regulation would educate "Other" people about nutrition. Lower levels of support for zoning restrictions and taxes were associated with concerns about government overreach and the questionable effectiveness of these regulations in changing behaviours. Levels of support for each regulation, and reasons for support or opposition, differed by gender and socio-economic status. CONCLUSION: Socio-demographic differences in support appeared to reflect gendered responsibilities for food provision and concerns about the material constraints of socio-economic deprivation. Engagement with target populations may offer insights to optimise the acceptability of regulations and minimise unintended social consequences. SO WHAT?: Resistance to regulations amongst socio-economically disadvantaged target populations warrants attention from public health advocates. Failure to accommodate concerns identified may further marginalise these groups.

A checklist for managed access programmes for reimbursement co-designed by Canadian patients and caregivers.

INTRODUCTION: Reimbursement decisions on orphan drugs carry significant uncertainty, and as the amount increases, so does the risk of making a wrong decision, where harms outweigh benefits. Consequently, patients often face limited access to orphan drugs. Managed access programmes (MAPs) are a mechanism for managing risk while enabling access to potentially beneficial drugs. Patients and their caregivers have expressed support for these programmes and see patient input as critical to successful implementation. However, they have yet to be systematically involved in their design. OBJECTIVE: The aim of this study was to co-design with patients and caregivers a tool for the development of managed access programmes. METHODS: Building upon established relationships with the Canadian Organization for Rare Disorders, the project team collaborated with patients and caregivers using the principles of participatory action research. Data were collected at two workshops and analysed using a thematic network approach. RESULTS: Patients and caregivers co-designed a checklist comprised of six aspects of an ideal MAP relating to accountability (programme goals); governance (MAP-specific committee oversight, patient input, international collaboration); and evidence collection (outcome measures and continuation criteria, on-going monitoring and registries). They recognized that health-care resources are finite and considered disease or drug eligibility criteria for deciding when to use a MAP (eg drugs treating diseases for which there are no other legitimate alternatives). CONCLUSIONS: A patient and caregiver-designed checklist was created, which emphasized patient involvement and transparency. Further research is needed to examine the feasibility of this checklist and roles for other stakeholders.

Prevalence and characteristics of overweight and obesity in indigenous Australian children: A systematic review.

Evidence-based profiling of obesity and overweight in Indigenous Australian children has been poor. This study systematically reviewed evidence of the prevalence and patterns of obesity/overweight, with respect to gender, age, remoteness, and birth weight, in Indigenous Australian children, 0-18 years (PROSPERO CRD42014007626). Study quality and risk of bias were assessed. Twenty-five publications (21 studies) met inclusion criteria, with large variations in prevalence for obesity or overweight (11 to 54%) reported. A high degree of heterogeneity in study design was observed, few studies (6/21) were representative of the target population, and few appropriately recruited Indigenous children (8/21). Variability in study design, conduct, and small sample sizes mean that it is not possible to derive a single estimate for prevalence although two high-quality studies indicate at least one in four Indigenous Australian children are overweight or obese. Four of six studies reporting on gender, found overweight/obesity higher in girls and eight studies reporting on overweight/obesity by age suggest prevalence increases with age with one high quality large national study reporting total overweight/obesity as 22.4% of children aged 2-4 years, 27.5% of those aged 5-9, 38.5% aged 10-14, and 36.3% aged 15-17. Three of four studies, reporting obesity/overweight by region, found lower rates for children living in more remote areas than urban areas.

CJCheck Stage 1: development and testing of a checklist for reporting community juries - Delphi process and analysis of studies published in 1996-2015.

BACKGROUND: Opportunities for community members to actively participate in policy development are increasing. Community/citizen's juries (CJs) are a deliberative democratic process aimed to illicit informed community perspectives on difficult topics. But how comprehensive these processes are reported in peer-reviewed literature is unknown. Adequate reporting of methodology enables others to judge process quality, compare outcomes, facilitate critical reflection and potentially repeat a process. We aimed to identify important elements for reporting CJs, to develop an initial checklist and to review published health and health policy CJs to examine reporting standards. DESIGN: Using the literature and expertise from CJ researchers and policy advisors, a list of important CJ reporting items was suggested and further refined. We then reviewed published CJs within the health literature and used the checklist to assess the comprehensiveness of reporting. RESULTS: CJCheck was developed and examined reporting of CJ planning, juror information, procedures and scheduling. We screened 1711 studies and extracted data from 38. No studies fully reported the checklist items. The item most consistently reported was juror numbers (92%, 35/38), while least reported was the availability of expert presentations (5%, 2/38). Recruitment strategies were described in 66% of studies (25/38); however, the frequency and timing of deliberations was inadequately described (29%, 11/38). CONCLUSIONS: Currently CJ publications in health and health policy literature are inadequately reported, hampering their use in policy making. We propose broadening the CJCheck by creating a reporting standards template in collaboration with international CJ researchers, policy advisors and consumer representatives to ensure standardized, systematic and transparent reporting.

Involving patients in health technology funding decisions: stakeholder perspectives on processes used in Australia.

BACKGROUND: Governments use a variety of processes to incorporate public perspectives into policymaking, but few studies have evaluated these processes from participants' point of view. OBJECTIVE: The objective of this study was twofold: to understand the perspectives of selected stakeholders with regard to involvement processes used by Australian Advisory Committees to engage the public and patients; and to identify barriers and facilitators to participation. DESIGN: Twelve semi-structured interviews were conducted with representatives of different stakeholder groups involved in health technology funding decisions in Australia. Data were collected and analysed using a theoretical framework created by Rowe and Frewer, but adapted to more fully acknowledge issues of power and influence. RESULTS: Stakeholder groups disagreed as to what constitutes effective and inclusive patient involvement. Barriers reported by interviewees included poor communication, a lack of transparency, unworkable deadlines, and inadequate representativeness. Also described were problems associated with defining the task for patients and their advocates and with the timing of patient input in the decision-making process. Interviewees suggested that patient participation could be improved by increasing the number of patient organizations engaged in processes and including those organizations at different stages of decision making, especially earlier. CONCLUSIONS: The different evaluations made by stakeholder groups appear to be underpinned by contrasting conceptions of public involvement and its value, in line with Graham Martin's work which distinguishes between 'technocratic' and 'democratic' public involvement. Understanding stakeholders' perspectives and the contrasting conceptions of public involvement could foster future agreement on which processes should be used to involve the public in decision making.

Emotion in obesity discourse: understanding public attitudes towards regulations for obesity prevention.

Intense concern about obesity in the public imagination and in political, academic and media discourses has catalysed advocacy efforts to implement regulatory measures to reduce the occurrence of obesity in Australia and elsewhere. This article explores public attitudes towards the possible implementation of regulations to address obesity by analysing emotions within popular discourses. Drawing on reader comments attached to obesity-relevant news articles published on Australian news and current affairs websites, we examine how popular anxieties about the 'obesity crisis' and vitriol directed at obese individuals circulate alongside understandings of the appropriate role of government to legitimise regulatory reform to address obesity. Employing Ahmed's theorisation of 'affective economies' and broader literature on emotional cultures, we argue that obesity regulations achieve popular support within affective economies oriented to neoliberal and individualist constructions of obesity. These economies preclude constructions of obesity as a structural problem in popular discourse; instead positioning anti-obesity regulations as a government-endorsed vehicle for discrimination directed at obese people. Findings implicate a new set of ethical challenges for those championing regulatory reform for obesity prevention.

Citizens' Perspectives on Disinvestment from Publicly Funded Pathology Tests: A Deliberative Forum.

BACKGROUND: Deliberative forums can be useful tools in policy decision making for balancing citizen voice and community values against dominant interests. OBJECTIVE: To describe the use of a deliberative forum to explore community perspectives on a complex health problem-disinvestment. METHODS: A deliberative forum of citizens was convened in Adelaide, South Australia, to develop criteria to support disinvestment from public funding of ineffective pathology tests. The case study of potential disinvestment from vitamin B12/folate pathology testing was used to shape the debate. The forum was informed by a systematic review of B12/folate pathology test effectiveness and expert testimony. RESULTS: The citizens identified seven criteria: cost of the test, potential impact on individual health/capacity to benefit, potential cost to society, public good, alternatives to testing, severity of the condition, and accuracy of the test. The participants not only saw these criteria as an interdependent network but also questioned "the authority" of policymakers to make these decisions. CONCLUSIONS: Coherence between the criteria devised by the forum and those described by an expert group was considerable, the major differences being that the citizens did not consider equity issues and the experts neglected the "cost" of social and emotional impact of disinvestment on users and the society.

Disinvestment policy and the public funding of assisted reproductive technologies: outcomes of deliberative engagements with three key stakeholder groups.

BACKGROUND: Measures to improve the quality and sustainability of healthcare practice and provision have become a policy concern. In addition, the involvement of stakeholders in health policy decision-making has been advocated, as complex questions arise around the structure of funding arrangements in a context of limited resources. Using a case study of assisted reproductive technologies (ART), deliberative engagements with a range of stakeholder groups were held on the topic of how best to structure the distribution of Australian public funding in this domain. METHODS: Deliberative engagements were carried out with groups of ART consumers, clinicians and community members. The forums were informed by a systematic review of ART treatment safety and effectiveness (focusing, in particular, on maternal age and number of treatment cycles), as well as by international policy comparisons, and ethical and cost analyses. Forum discussions were transcribed and subject to thematic analysis. RESULTS: Each forum demonstrated stakeholders' capacity to understand concepts of choice under resource scarcity and disinvestment, and to countenance options for ART funding not always aligned with their interests. Deliberations in each engagement identified concerns around 'equity' and 'patient responsibility', culminating in a broad preference for (potential) ART subsidy restrictions to be based upon individual factors rather than maternal age or number of treatment cycles. Community participants were open to restrictions based upon measures of body mass index (BMI) and smoking status, while consumers and clinicians saw support to improve these factors as part of an ART treatment program, as distinct from a funding criterion. All groups advocated continued patient co-payments, with measures in place to provide treatment access to those unable to pay (namely, equity of access). CONCLUSIONS: Deliberations yielded qualitative, socially-negotiated evidence required to inform ethical, accountable policy decisions in the specific area of ART and health care more broadly. Notably, reductionist, deterministic characterizations of stakeholder 'self-interest' proved unfounded as each group sought to prioritise universal values (in particular, 'equity' and 'responsibility') over specific, within-group concerns. Our results--from an emotive case study in ART--highlight that evidence-informed disinvestment decision-making is feasible, and potentially less controversial than often presumed.

Understanding the school community's response to school closures during the H1N1 2009 influenza pandemic.

BACKGROUND: During the 2009 H1N1 influenza pandemic, Australian public health officials closed schools as a strategy to mitigate the spread of the infection. This article examines school communities' understanding of, and participation in, school closures and the beliefs and values which underpinned school responses to the closures. METHODS: We interviewed four school principals, 25 staff, 14 parents and 13 students in five schools in one Australian city which were either fully or partially closed during the 2009 H1N1 pandemic. RESULTS: Drawing on Thompson et al's ethical framework for pandemic planning, we show that considerable variation existed between and within schools in their attention to ethical processes and values. In all schools, health officials and school leaders were strongly committed to providing high quality care for members of the school community. There was variation in the extent to which information was shared openly and transparently, the degree to which school community members considered themselves participants in decision-making, and the responsiveness of decision-makers to the changing situation. Reservations were expressed about the need for closures and quarantine and there was a lack of understanding of the rationale for the closures. All schools displayed a strong duty of care toward those in need, although school communities had a broader view of care than that of the public health officials. Similarly, there was a clear understanding of and commitment to protect the public from harm and to demonstrate responsible stewardship. CONCLUSIONS: We conclude that school closures during an influenza pandemic represent both a challenge for public health officials and a litmus test for the level of trust in public officials, government and the school as institution. In our study, trust was the foundation upon which effective responses to the school closure were built. Trust relations within the school were the basis on which different values and beliefs were used to develop and justify the practices and strategies in response to the pandemic.

Melanoma follow up: time to generate the evidence.

Research is needed into current melanoma follow-up practices and their implications for patients and society. We highlight the need and suggest a way forward.

Challenges in the Evaluation of Emerging Highly Specialised Technologies: Is There a Role for Living HTA?

There is currently deep uncertainty about the clinical benefits and cost effectiveness of highly specialised technologies (HSTs), like gene and cell therapies. These treatments are novel, typically have high upfront costs, the patient populations are small and heterogenous, there is minimal information on their long-term safety and effectiveness, and data are limited and often of poor quality. With the increasing number of these technologies and their high cost burden on governments and health care providers, policy makers are currently walking a decision tightrope. On the one hand, an unfavourable funding decision could potentially limit patient access to life-saving treatments, while on the other, a favourable decision could result in unsustainable budget impacts and perhaps poorer patient health outcomes. Health technology assessment (HTA) is meant to determine the value of a health technology in order to promote an equitable, efficient, and high-quality health system. However, standard HTA processes have failed to mitigate the deep uncertainties associated with these technologies. In this paper, we propose a Living HTA framework to address these challenges. This framework includes a one-off process for making explicit the societal values associated with HSTs. These would inform the decision-making approach, data collection and the development of disease-specific reference models to be used by industry sponsors as the basis for their submissions for public funding. Coverage with an evidence development mechanism is also proposed by which data can be collected in real time to update the reference model on a rolling basis, thereby allowing re-assessment of the clinical and cost effectiveness of individual HSTs. The HTA would be 'live' until the results indicate there is sufficient certainty for the funding decision to be confirmed, the price changed or the funding removed.

Ethical issues in big data: A qualitative study comparing responses in the health and higher education sectors.

INTRODUCTION: The health and higher education sectors are increasingly using large administrative datasets for secondary purposes. Both sectors experience ethical challenges in the use of big data. This study identifies and explores how these two sectors are responding to these ethical challenges. OBJECTIVES AND APPROACH: Through in-depth qualitative interviews, we asked 18 key Australian stakeholders using or sharing big data in the health and higher education sectors to identify the ethical, social and legal issues associated with big data use and their views on how to build ethical policies in this area. RESULTS: There was strong agreement between participants in the two sectors in a number of areas. All participants believed in the benefits of data usage and recognised the importance of privacy, transparency and consent, and the duties for data custodians which followed from these principles. However, there were also significant differences. The participants in the two sectors took different views on what data are for, what benefits data should provide, who should benefit and how, and the imagined unit of analysis for working with data. Broadly, participants from the higher education sector approached these questions with individual students in mind, while health sector informants approached these questions with collectives, groups, or publics in mind. In deciding what to do, the health participants drew principally on a shared toolkit of legislative, regulatory and ethical instruments, and higher education participants on a culture of duties towards individuals. CONCLUSION / IMPLICATIONS: The health and higher education sectors are responding to ethical challenges in the use of big data in different, but potentially complementary, ways.

Older Adults' Perspectives of Smart Technologies to Support Aging at Home: Insights from Five World Café Forums.

Globally, there is an urgent need for solutions that can support our aging populations to live well and reduce the associated economic, social and health burdens. Implementing smart technologies within homes and communities may assist people to live well and 'age in place'. To date, there has been little consultation with older Australians addressing either the perceived benefits, or the potential social and ethical challenges associated with smart technology use. To address this, we conducted five World Cafés in two Australian states, aiming to capture citizen knowledge about the possibilities and challenges of smart technologies. The participants (n = 84) were aged 55 years and over, English-speaking, and living independently. Grounding our analysis in values-based social science and biomedical ethical principles, we identified the themes reflecting the participants' understanding, resistance, and acceptance of smart technologies, and the ethical principles, including beneficence, non-maleficence, autonomy, privacy, confidentiality, and justice. Similar to other studies, many of the participants demonstrated cautious and conditional acceptance of smart technologies, while identifying concerns about social isolation, breaches of privacy and confidentiality, surveillance, and stigmatization. Attention to understanding and incorporating the values of older citizens will be important for the acceptance and effectiveness of smart technologies for supporting independent and full lives for older citizens.

News and social media: windows into community perspectives on disinvestment.

OBJECTIVES: The aim of this study, in the context of disinvestment related health technology assessment, is to examine whether analysis of Web 2.0--commercial media output, blogs, and discussion forums--can provide an understanding of media framing, community perspectives, and the sociopolitical aspects of an entrenched technology. METHODS: Thematic analysis of relevant data from fifty-nine media articles, thirty-nine discussion forums, thirteen blogs, and three Facebook pages relating to our case study: public funding for assisted reproductive technology services. Mainstream media and community-based social media responses were compared. RESULTS: Media responses were narrow, primarily describing emotive individual narratives or the political nexus of interests. Community (including patient) responses were broader including discussion of opportunity cost and vested interests but mostly reflected the polar ends of the debate, diverging strongly for or against disinvestment from public funding. CONCLUSION: Web2.0 and media analysis offers an inexpensive method to capture media portrayal, divergent community responses both to that portrayal and independent of it, and insight into the sociopolitical aspects of an entrenched technology undergoing disinvestment debate.