Community views on the secondary use of general practice data: Findings from a mixed-methods study.

INTRODUCTION: General practice data, particularly when combined with hospital and other health service data through data linkage, are increasingly being used for quality assurance, evaluation, health service planning and research. In this study, we explored community views on sharing general practice data for secondary purposes, including research, to establish what concerns and conditions need to be addressed in the process of developing a social licence to support such use. METHODS: We used a mixed-methods approach with focus groups (November-December 2021), followed by a cross-sectional survey (March-April 2022). RESULTS: The participants in this study strongly supported sharing general practice data with the clinicians responsible for their care, and where there were direct benefits for individual patients. Over 90% of survey participants (N = 2604) were willing to share their general practice information to directly support their health care, that is, for the primary purpose of collection. There was less support for sharing data for secondary purposes such as research and health service planning (36% and 45% respectively in broad agreement) or for linking general practice data to data in the education, social services and criminal justice systems (30%-36%). A substantial minority of participants were unsure or could not see how benefits would arise from sharing data for secondary purposes. Participants were concerned about the potential for privacy breaches, discrimination and data misuse and they wanted greater transparency and an opportunity to consent to data release. CONCLUSION: The findings of this study suggest that the public may be more concerned about sharing general practice data for secondary purposes than they are about sharing data collected in other settings. Sharing general practice data more broadly will require careful attention to patient and public concerns, including focusing on the factors that will sustain trust and legitimacy in general practice and GPs. PATIENT AND PUBLIC CONTRIBUTION: Members of the public were participants in the study. Data produced from their participation generated study findings. CLINICAL TRIAL REGISTRATION: Not applicable.

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.

Selling function: the advertising of sugar-containing beverages on Australian television.

Reducing population consumption of sugar-containing beverages has become a public health priority in many countries due to causal evidence between high consumption, weight gain and non-communicable diseases. This study aims to explore how sugar-containing beverages are associated with health and wellness in television advertisements. Our sample consisted of all televised advertisements from sugar-containing beverage manufacturers aired on free-to-air television from one Australian network (four channels) in 2016 (n = 30 unique advertisements). We transcribed advertisements for audio and visual information. We analysed data inductively using methods from thematic, discourse and multi-modal analysis. Advertisements for sugar-containing beverages reflected both traditional (physical health and reduced risk of disease) and broader (wellbeing) conceptualizations of health. Beverages were positioned in advertisements as contributing a functional role to promote and enhance health and wellbeing within the physical, mental and social domains. Beverages were advertised as correcting suboptimal states of being to achieve desirable outcomes, including relaxation, increased resistance to disease, enhanced performance, better cognitive functioning and improved social connections. Positioning beverages within a wider conceptualization of health and wellbeing aligns with how health and nutrition are increasingly being understood and sought out by consumers, creating increased opportunities for the marketing of sugar-containing beverages as 'healthy'.

What makes a beverage healthy? A qualitative study of young adults' conceptualisation of sugar-containing beverage healthfulness.

Sugar-containing beverages are the leading source of added sugar consumption among young adults. The aim of this study was to explore how young adults conceptualise what influences the healthfulness of sugar-containing beverages. Seven focus groups stratified by gender and educational institute were conducted with South Australians aged 18-25 years (n = 32). Focus groups were semi-structured and included a ranking activity where participants individually ranked eight beverages from least to most healthy. Focus groups were recorded, transcribed verbatim and thematically analysed. Participants commonly selected soda (soft drink) and energy drink as the least healthy beverage and water as the healthiest, but those between varied in rankings. Four themes were identified relating to how participants conceptualise beverage healthfulness in the thematic analysis: ingredients harmful to health, properties beneficial to health, functionality, and packaging. While participants were aware that beverages can contain high amounts of sugar, and that this can be harmful to health, many other factors influence the perceptions of beverage healthfulness and these can outweigh the perceived harms of consumption. Public health interventions and policies are needed to address misperceptions about the healthfulness of sugar-containing beverages to better put the harms of high sugar consumption in perspective for consumers.

Should we screen for frailty in primary care settings? A fresh perspective on the frailty evidence base: A narrative review.

With older adults living longer, health service providers have increasingly turned their attention towards frailty and its significant consequences for health and well-being. Consequently, frailty screening has gained momentum as a possible health policy answer to the question of what can be done to prevent frailty's onset and progression. However, who should be screened for frailty, where and when remains a subject of extensive debate. The purpose of this narrative review is to explore the dimensions of this question with reference to Wilson and Jungner's time-tested and widely accepted principles for acceptable screening within community settings. Although the balance of the emerging evidence to support frailty screening is promising, significant gaps in the evidence base remain. Consequently, when assessed against Wilson and Jungner's principles, extensive population screening does not appear to be supported by the evidence. However, screening for the purpose of case-finding may prove useful among older adults.

Industry use of 'better-for-you' features on labels of sugar-containing beverages.

OBJECTIVE: To examine the ways in which sugar-containing beverages are being portrayed as 'better-for-you' (BFY) via features on product labels. DESIGN: Cross-sectional audit of beverage labels. SETTING: Adelaide, Australia. Data on beverage labels were collected from seventeen grocery stores during September to November 2016. SUBJECTS: The content of 945 sugar-containing beverages labels were analysed for explicit and implicit features positioning them as healthy or BFY. RESULTS: The mean sugar content of beverages was high at 8·3 g/100 ml and most sugar-containing beverages (87·7 %) displayed features that position them as BFY. This was most commonly achieved by indicating the beverages are natural (76·8 %), or contain reduced or natural energy/sugar content (48·4 %), or through suggesting that they contribute to meeting bodily needs for nutrition (28·9 %) or health (15·1 %). Features positioning beverages as BFY were more common among certain categories of beverages, namely coconut waters, iced teas, sports drinks and juices. CONCLUSIONS: A large proportion of sugar-containing beverages use features on labels that position them as healthy or BFY despite containing high amounts of sugar.

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.

Parent perspectives on consent for the linkage of data to evaluate vaccine safety: a randomised trial of opt-in and opt-out consent.

BACKGROUND: We examined parents' consent preferences and understanding of an opt-in or opt-out invitation to participate in data linkage for post-marketing safety surveillance of childhood vaccines. METHODS: A single-blind parallel-group randomised controlled trial: 1129 families of babies born at a South Australian hospital in 2009 were sent information at 6 weeks post-partum, explaining data linkage of childhood immunisation and hospital records for vaccine safety surveillance, with 4 weeks to opt in or opt out by reply form, telephone, or email. At 10 weeks post-partum, 1026 (91%) parents were followed up by telephone interview. RESULTS: In both the opt-in (n = 564) and opt-out arms (n = 565), four-fifths of the parents recalled receiving the information (81% vs. 83%, P = 0.35), three-fifths reported reading it (63% vs. 67%, P = 0.11), but only two-fifths correctly identified the health records to be linked (43% vs. 39%, P = 0.21). Parents who actively consented (opted in) were more likely than those who passively consented (did not opt out) to recall the information (100% vs. 83%, P < 0.001), report reading it (94% vs. 67%, P < 0.001), and correctly identify the data sources (60% vs. 39%, P < 0.001). Most parents supported data linkage for vaccine safety surveillance (94%) and trusted its privacy protections (84%). Most parents wished to have minimal or no direct involvement, preferring either opt-out consent (40%) or no consent (30%). A quarter (24%) of parents indicated opt-in consent should be sought; of these, 8% requested consent prior to every use, 5% preferred to give broad consent just once and 11% preferred periodic renewal. Three-fifths of the parents gave higher priority to rapid vaccine safety surveillance (61%) rather than first seeking parental consent (21%), and one in seven was undecided (15%). Although 91% of parents reported that their babies were fully immunised (76%) or under-immunised (15%), and trusted vaccines as safe (90%), three-fifths (62%) were very or somewhat concerned about serious reactions. LIMITATIONS: The context of data linkage is limited to vaccine safety surveillance. Only recall and understanding retained at 1 month post enrolment were measured. CONCLUSIONS: This trial demonstrates that informed consent for a population-based surveillance programme cannot realistically be achieved using mail-based opt-in and opt-out approaches. While recall and understanding of the study's purpose were better among parents who actively consented (opted in) compared with parents who passively consented (did not opt out), participation was substantially lower (21% vs. 96% respectively). Most parents appeared to have a poor understanding of data linkage for vaccine safety surveillance; nonetheless, they supported data linkage. They preferred a system utilising opt-out consent or no consent to one using opt-in consent.

Identifying the quality of life effects of urinary incontinence with depression in an Australian population.

BACKGROUND: To explore the additive effect of urinary incontinence, in people with comorbid depression, on health related quality of life. METHODS: Males and females, 15 to 95 years (n = 3010, response rate 70.2%) were interviewed face to face in the 1998 Autumn South Australian Health Omnibus Survey. RESULTS: Self-reported urinary incontinence was found in 20.3% (n=610), and depression as defined by the PRIME-MD in 15.2% (n=459) of the survey population. Urinary incontinence with comorbid depression was found in 4.3% of the overall population. Univariate analysis showed that respondents with urinary incontinence and comorbid depression were more likely to be aged between 15 and 34 years and never married when compared to those with incontinence only. Multivariate analysis demonstrated that in people with incontinence, the risk of having comorbid depression was increased by an overall health status of Fair or Poor, or the perception that their incontinence was moderately or very serious. Respondents reporting that they experienced incontinence with comorbid depression scored significantly lower than those experiencing incontinence without depression on all dimensions of the SF-36.The interaction of the presence of incontinence and the presence of depression was significantly associated with the dimensions of physical functioning. CONCLUSIONS: Depression and incontinence both reduce QOL. When they occur together there appears to be an additive effect which affects both physical and mental health, perhaps by increasing a person's negative perceptions of their illness. Clinicians should identify and manage comorbid depression when treating patients who have incontinence to improve their overall QOL.

A randomised controlled trial to compare opt-in and opt-out parental consent for childhood vaccine safety surveillance using data linkage.

INTRODUCTION: No consent for health and medical research is appropriate when the criteria for a waiver of consent are met, yet some ethics committees and data custodians still require informed consent. METHODS: A single-blind parallel-group randomised controlled trial: 1129 families of children born at a South Australian hospital were sent information explaining data linkage of childhood immunisation and hospital records for vaccine safety surveillance with 4 weeks to opt in or opt out by reply form, telephone or email. A subsequent telephone interview gauged the intent of 1026 parents (91%) in relation to their actions and the sociodemographic differences between participants and non-participants in each arm. RESULTS: The participation rate was 21% (n=120/564) in the opt-in arm and 96% (n=540/565) in the opt-out arm (χ(2) (1 df) = 567.7, p<0.001). Participants in the opt-in arm were more likely than non-participants to be older, married/de facto, university educated and of higher socioeconomic status. Participants in the opt-out arm were similar to non-participants, except men were more likely to opt out. Substantial proportions did not receive, understand or properly consider study invitations, and opting in or opting out behaviour was often at odds with parents' stated underlying intentions. CONCLUSIONS: The opt-in approach resulted in low participation and a biased sample that would render any subsequent data linkage unfeasible, while the opt-out approach achieved high participation and a representative sample. The waiver of consent afforded under current privacy regulations for data linkage studies meeting all appropriate criteria should be granted by ethics committees, and supported by data custodians. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry ACTRN12610000332022.

Including the public in pandemic planning: a deliberative approach.

BACKGROUND: Against a background of pandemic threat posed by SARS and avian H5N1 influenza, this study used deliberative forums to elucidate informed community perspectives on aspects of pandemic planning. METHODS: Two deliberative forums were carried out with members of the South Australian community. The forums were supported by a qualitative study with adults and youths, systematic reviews of the literature and the involvement of an extended group of academic experts and policy makers. The forum discussions were recorded with simultaneous transcription and analysed thematically. RESULTS: Participants allocated scarce resources of antiviral drugs and pandemic vaccine based on a desire to preserve society function in a time of crisis. Participants were divided on the acceptability of social distancing and quarantine measures. However, should such measures be adopted, they thought that reasonable financial, household and psychological support was essential. In addition, provided such support was present, the participants, in general, were willing to impose strict sanctions on those who violated quarantine and social distancing measures. CONCLUSIONS: The recommendations from the forums suggest that the implementation of pandemic plans in a severe pandemic will be challenging, but not impossible. Implementation may be more successful if the public is engaged in pandemic planning before a pandemic, effective communication of key points is practiced before and during a pandemic and if judicious use is made of supportive measures to assist those in quarantine or affected by social isolation measures.

Pandemic influenza communication: views from a deliberative forum.

OBJECTIVE: To use a deliberative forum to elicit community perspectives on communication about pandemic influenza planning, and to compare these findings with the current Australian national communication strategy. DESIGN: Deliberative forum of 12 persons randomly selected from urban South Australia. Forum members were briefed by experts in infection control, virology, ethics and public policy before deliberating on four key questions: what, how and when should the community be told about pandemic influenza and by whom? RESULTS: The forum recommended provision of detailed and comprehensive information by credible experts, rather than politicians, using a variety of media including television and internet. Recommendations included cumulative communication to build expertise in the community, and specific strategies to include groups such as young people, people with physical or mental disabilities, and rural and remote communities. Information provided should be practical, accurate, and timely, with no 'holding back' about the seriousness of a pandemic. The forum expressed confidence in the expert witnesses, despite the acknowledged uncertainty of many of the predictions. DISCUSSION AND CONCLUSION: The deliberative forum's recommendations were largely consistent with the Australian national pandemic influenza communication strategy and the relevant literature. However, the forum recommended: release of more detailed information than currently proposed in the national strategy; use of non-political spokespersons; and use of novel communication methods. Their acceptance of uncertainty suggests that policy makers should be open about the limits of knowledge in potentially threatening situations. Our findings show that deliberative forums can provide community perspectives on topics such as communication about pandemic influenza.

Virtual community consultation? Using the literature and weblogs to link community perspectives and health technology assessment.

BACKGROUND: Community views, expressed in social impact assessments and collected through community consultation, should play an important role in health technology assessment (HTA). Yet HTA methodologists have been slow to include outcomes of these forms of inquiry in analyses, in part because collecting community views is time-consuming and resource intensive. OBJECTIVE: To explore how community views sourced from published studies, grey literature and informal internet web pages can inform HTA. METHODS: A technology reviewed by Adelaide HTA in 2004 was selected: retinal photography for detection of diabetic retinopathy. Published literature, 'grey' literature and informal web pages were searched to examine the availability of evidence about service community and user community views with respect to this technology. Particular efforts were made to source evidence relating to rural, remote and Aboriginal populations. RESULTS: We found that journal articles, reports from the grey literature and informal internet web pages (including blogs and discussion forums) can provide valuable insight into community views. Although there was little empirical evidence relating to the experience of diabetes and diabetes management in rural, remote and Aboriginal communities, there were indications that some evidence may be transferable from other populations. CONCLUSIONS: Community perspectives on selected health technologies can be gauged from available resources in published and grey literature and perspectives collected in this way can provide insight into whether the introduction of the technology would be acceptable to the community. The limitations of this approach are discussed.

The marketing of sugar-sweetened beverages to young people on Facebook.

OBJECTIVE: We explored how sugar-sweetened beverages are marketed to Australian young people through sugar-sweetened beverage brand Facebook pages. METHODS: We undertook a content analysis of Facebook posts made by six of the most popular sugar-sweetened beverage Facebook pages in Australia. Data were collected for a six-month period and were quantitatively analysed for descriptive data and explicit marketing techniques and then thematically analysed for implicit marketing messages. RESULTS: There were almost 1.9 million engagements across the six pages over the six-month period. Most posts (70%) included one or more calls to action through which followers were encouraged to do something. Content by sports and energy drink brands were heavily dominated by 'sporting prowess' and 'masculinity' themes while content by Coca-Cola shared the message of 'having fun with friends' and 'happiness'. All pages used outdoor setting scenes. CONCLUSIONS: Sugar-sweetened beverage brands use Facebook to align their marketing with the socio-cultural values and practices likely to be regarded as important by young people. Implications for public health: Our findings provide challenges and opportunities for those in public health advocacy and policy to consider for future obesity-reduction strategies.

The information needs of women diagnosed with Polycystic Ovarian Syndrome--implications for treatment and health outcomes.

BACKGROUND: This paper reports the findings of an exploratory study about the information women diagnosed with Polycystic Ovarian Syndrome (PCOS) want to know about their condition and the consequences of this information for future treatment and health outcomes. METHODS: In-depth qualitative interviews regarding their information needs were undertaken with ten South Australian women diagnosed with PCOS. These women were aged 28-38 years and at differing stages of their fertility experience. The time since diagnosis ranged from 1-17 years. The main outcome measures sought were the identification of the information needs of women diagnosed with Polycystic Ovarian Syndrome (PCOS) during different periods of their lives; how and where they obtain this information, and the consequences of this information for future treatment and health outcomes. RESULTS: The women with PCOS in this study preferentially used the Internet for their information needs, as it had the advantages of convenience, privacy and accessibility, when compared with traditional mechanisms of information provision. CONCLUSION: Giving a name to a collection of symptoms may bring relief and provide recognition that there really is a problem. However, with a diagnosis comes the need to have questions answered. A diagnosis of a chronic condition such as PCOS necessitates decision-making regarding possible treatment strategies and lifestyle choices. Information is needed in order to participate in shared decision making. The Internet proved to be a most versatile and beneficial source of information source for women with PCOS, if its limitations are taken into consideration.

Community perspectives on the use of regulation and law for obesity prevention in children: A citizens' jury.

INTRODUCTION: Childhood obesity is a significant challenge for public health internationally. Regulatory and fiscal measures propagated by governments offer a potentially effective response to this issue. Fearing public criticism, governments are often reluctant to use such measures. In this study we asked a descriptively representative and informed group of Australians their views on the use of legislation and fiscal measures by governments to address childhood obesity. METHODS: A citizens' jury, held in South Australia in April 2015, was asked to consider the question: What laws, if any, should we have in Australia to address childhood obesity? RESULTS: The jury agreed that prevention of obesity was complex requiring multifaceted government intervention. Recommendations fell into the areas of health promotion and education (n=4), regulation of food marketing (n=3), taxation/subsidies (n=2) and a parliamentary enquiry. School-based nutrition education and health promotion and mandatory front-of-pack interpretive labelling of food and drink were ranked 1 and 2 with taxation of high fat, high sugar food and drink third. CONCLUSION: The recommendations were similar to findings from other citizens' juries held in Australia suggesting that the reticence of decision makers in Australia, and potentially elsewhere, to use legislative and fiscal measures to address childhood obesity is misguided. Supporting relevant informed public discussion could facilitate a politically acceptable legislative approach.

Public perspectives on consent for the linkage of data to evaluate vaccine safety.

INTRODUCTION: We sought community opinion on consent alternatives when linking childhood immunisation and hospital attendance records for the purpose of vaccine safety surveillance. METHODS: We conducted computer-assisted telephone interviewing (CATI) of a sample of rural and metropolitan residents of South Australia in 2011. RESULTS: Of 2002 households interviewed (response rate 55.6%), 96.4% supported data linkage for postmarketing surveillance of vaccines; very few were completely opposed (1.5%) or undecided (2.2%). The majority (75.3%) trusted the privacy protections used in data linkage and most wished to have minimal or no direct involvement, preferring either opt-out consent (40.4%) or no consent (30.6%). A quarter of respondents (24.6%) favoured opt-in consent, but their preferences were divergent; half requested consent be sought prior to every use (11.4%) while the remainder preferred to give broad consent just once (3.4%) or renewed at periodic intervals (9.8%). Over half of the respondents gave higher priority to rapid vaccine safety surveillance (56.5%) rather than first seeking parental consent (26.6%) and one in seven was undecided (14.5%). Although 91.6% of respondents believed childhood vaccines are safe, over half (53.1%) were very or somewhat concerned that a vaccine could cause a serious reaction. Nevertheless, 92.4% of the parents in the sample (556/601) reported every child in their care as being fully immunised according to the National Immunisation Program schedule. Only 3.7% of parents (22/601) reported one or more children as under immunised, and 3.9% (23/601) reported that none of their children were immunised. CONCLUSIONS: This survey demonstrates that data linkage for vaccine safety surveillance has substantial community support and that a system utilising opt-out consent or no consent was preferred to one using opt-in consent. These findings should inform public health policy and practice; data linkage should be established where feasible to address limitations in passive surveillance systems.