Views of general practice staff on sharing general practice data for research: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to understand the range and types of evidence in relation to the views of general practitioner and other general practice staff on sharing general practice data for research purposes. INTRODUCTION: The use of general practice data for research has the potential to drive transformative improvements in health care. The vast amount of patient data collected in general practice is valuable and provides researchers with data to conduct large-scale studies and generate evidence that can inform policy decisions, support the development of personalized medicine, and enhance patient outcomes. However, despite there being clear benefits to using general practice data for research, there are also potential harms, such as data misuse, loss of trust between the general practitioner and patient, and data breaches. INCLUSION CRITERIA: This scoping review will focus on the views of general practice staff, including general practitioners, practice nurses, and practice managers, about sharing general practice data for the purposes of research. This scoping review will exclude sources of evidence that are conducted outside of the general practice setting, and papers that report on public, patient, or community views on data sharing. METHODS: This scoping review will be conducted in accordance with JBI methodology for scoping reviews. A 3-step search strategy will be used to acquire both published and unpublished sources of evidence. Two independent reviewers will select sources of evidence in line with the inclusion and exclusion criteria. No limits on the date of the search or language will be applied. Data will be extracted and the results will be summarized descriptively and presented in a tabular format. REVIEW REGISTRATION: Open Science Framework https://osf.io/49yw5.

How should artificial intelligence be used in Australian health care? Recommendations from a citizens' jury.

OBJECTIVE: To support a diverse sample of Australians to make recommendations about the use of artificial intelligence (AI) technology in health care. STUDY DESIGN: Citizens' jury, deliberating the question: "Under which circumstances, if any, should artificial intelligence be used in Australian health systems to detect or diagnose disease?" SETTING, PARTICIPANTS: Thirty Australian adults recruited by Sortition Foundation using random invitation and stratified selection to reflect population proportions by gender, age, ancestry, highest level of education, and residential location (state/territory; urban, regional, rural). The jury process took 18 days (16 March - 2 April 2023): fifteen days online and three days face-to-face in Sydney, where the jurors, both in small groups and together, were informed about and discussed the question, and developed recommendations with reasons. Jurors received extensive information: a printed handbook, online documents, and recorded presentations by four expert speakers. Jurors asked questions and received answers from the experts during the online period of the process, and during the first day of the face-to-face meeting. MAIN OUTCOME MEASURES: Jury recommendations, with reasons. RESULTS: The jurors recommended an overarching, independently governed charter and framework for health care AI. The other nine recommendation categories concerned balancing benefits and harms; fairness and bias; patients' rights and choices; clinical governance and training; technical governance and standards; data governance and use; open source software; AI evaluation and assessment; and education and communication. CONCLUSIONS: The deliberative process supported a nationally representative sample of citizens to construct recommendations about how AI in health care should be developed, used, and governed. Recommendations derived using such methods could guide clinicians, policy makers, AI researchers and developers, and health service users to develop approaches that ensure trustworthy and responsible use of this technology.

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.

Ethical issues when conducting health research with military personnel: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to understand the scope and nature of evidence in relation to the ethical issues that arise when conducting health research with military personnel. INTRODUCTION: Ethical obligations in human research have been debated for centuries. Historically, research conducted with military personnel has led to ethical controversies regarding autonomy, harm, and informed consent. In particular, the power dynamics, hierarchical nature, and culture that are inherent in military structures may compromise the voluntary nature of research participation. INCLUSION CRITERIA: This scoping review will include all sources of evidence that identify ethical issues, such as autonomy, beneficence, non-maleficence, and justice, within health research with military personnel, including reservists. This review will exclude sources of evidence on health research conducted during combat or on new technologies for fighting in wars. METHODS: This scoping review will be conducted in accordance with the JBI methodology for scoping reviews. A 3-step search strategy will be used to obtain both published and unpublished sources of evidence. Two independent reviewers will screen sources of evidence against the inclusion and exclusion criteria. No limits on language will be applied; we will use Google Translate to translate sources of evidence in languages other than English. Sources of evidence published since 1964 will be included. Data will be extracted using a purpose-designed spreadsheet and the results will be summarized descriptively and presented in tabular format. REVIEW REGISTRATION: Open Science Framework https://osf.io/db85p.

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.

Engaging young people and their caregivers in support services following harmful sexual behaviors: Qualitative analysis.

BACKGROUND: Harmful sexual behavior (HSB) displayed by children and young people under the age of 18 has been described as developmentally inappropriate, may be harmful towards self or others, or be abusive towards another child, young person, or adult. Early intervention and treatment completion are crucial to cease HSB, reduce impacts and address underlying issues for the child who has displayed HSB. Considerable shame attaches to seeking help for this stigmatized behavior which may result in dropout from support services. Understanding young people and caregivers' experiences of what facilitates or hinders their engagement with support services is therefore critical to preventing re-occurrence of HSB and keeping children safe. OBJECTIVE: This article draws on the first-hand experience of young people and caregivers to address the question: What have they found helpful and unhelpful when engaging with services for harmful sexual behavior? PARTICIPANTS AND SETTING: Participants were recruited from public health and youth justice services in the state of New South Wales, Australia. The 31 participants included 11 young people (aged 14 to 17) and 20 caregivers (parents, foster or kinship carers). METHODS: Qualitative data were collected through individual semi-structured interviews, following which thematic analysis was conducted. RESULTS: Data analysis identified three helpful responses: (1) non-judgmental recognition of crisis; (2) child-centred and family-focused orientation; and (3) multi-dimensional interventions. Unhelpful responses included: (1) closed doors (an inability to access a service) (2) stigmatization of HSB; and (3) reduced caregivers' autonomy. CONCLUSIONS: Greater involvement of caregivers, non-stigmatizing language and coordinated responses between generalist and specialist services are needed to facilitate service engagement.

Strengthening Schools' Responses to Students' Harmful Sexual Behaviors: A Scoping Review.

Research into harmful sexual behavior (HSB) by children and young people under the age of 18 has grown in recent years. A key concern emerging is the high prevalence of HSB in school settings. Although teachers are increasingly aware of HSB, their provision of effective responses has remained a major challenge. While progress has been made by providing teachers with best practice models and tools, little is known about what facilitates and hinders their application of these in practice. This scoping review sought to address the question: "What are the barriers and enablers for teachers in responding effectively to HSB?" Eight international databases and one search engine were employed to identify relevant academic and gray literature. The inclusion criteria comprised all study types, published in the past two decades, and focused on teachers' knowledge, experiences, and responses to HSB. Twenty-five publications met the inclusion criteria. Thematic analysis identified that minimization of HSB, harmful social norms, and inadequate support from external agencies were major barriers. These barriers could be mitigated by adopting a whole-school approach and establishing proactive partnerships with parents and external agencise, along with offering alternative pathways to safety. The findings of this review highlighted the importance of addressing the full continuum of HSB through early, secondary, or tertiary interventions, and sharpening the focus of respectful relationships education to transform gender relations in classrooms and the workplace. Further research is needed to explore schools' responses to specific populations, including those with disabilities and females.

Youth Attitudes to Domestic and Family Violence: A Scoping Review of Young People's Attitudes and Perceptions in Australia.

Domestic and family violence (DFV) has been described as a "national emergency" in Australia, with a suite of policies and interventions introduced over the past decade to better support women and their children. Within these frameworks, young people have been identified as agents of change for primary prevention; however, little is known about their attitudes and knowledge of DFV. This scoping review thus sought to establish the attitudes and knowledge of DFV held by young people (under 25 years old) in Australia. Nine international databases were searched, yielding 11 studies that met the inclusion criteria. The studies were quantitative, qualitative, and mixed methods in design, with the findings demonstrating that young Australians have good knowledge about DFV. However, the review also indicates problematic areas around young people's understanding of the harms of DFV with many continuing to hold victim-blaming attitudes. In addition, much of the existing research is survey-based in nature, there is no strong uniformity across the studies, nor is there an engaged approach to research design. Moreover, the current measures used in research are not sufficient to gauge where young people gain knowledge about DFV, nor do they explain under what conditions attitudes change or what are the medium- and long-term effects of DFV prevention work. We therefore contend that future research ought to be interdisciplinary and intersectional in nature and collaborate with a range of young people in order to understand their full potential as agents of social change and primary prevention.

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.

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.

Gross for kids but good for parents: differing messages in advertisements for the same products.

OBJECTIVES: There has been surprisingly little research into the effects of food advertising on parents' perception of commonly consumed children's food items, although the available research suggests that parents may find nutritional claims in these advertisements confusing. The purpose of the present study was to investigate parents' perceptions of branded snack foods targeted at children, and the extent to which these perceptions are influenced by advertising messages. DESIGN: Using an intercept survey, participants were shown either adult-targeted or child-targeted advertisements for the same food products. SETTING: Central business district of a major Australian city. SUBJECTS: One hundred adults, mean age 40 years. RESULTS: The study results suggest that: (1) adults' perceptions of advertised food products and, most importantly, purchase intentions for those products differ according to the version of the advertisement seen (for three of the products, 42-54% would buy the product after seeing the child version compared with 82-84% after seeing the adult version); and (2) adults clearly perceive distinctly different messages in advertisements for the same products which are targeting parents vs. those targeting children (e.g. for three of the products, 74-92% perceived that the adult version of the advertisement suggested the food was nutritionally beneficial compared with 2-14% perceiving this for the child version). CONCLUSIONS: It is clear that the messages conveyed to children about specific foods are quite different to the messages conveyed to adults - and importantly parents - about the same foods.