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 A 3-step search strategy will be used to acquire both published and unpublished sources of evidence.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.

Australian women's judgements about using artificial intelligence to read mammograms in breast cancer screening.

Objective: Mammographic screening for breast cancer is an early use case for artificial intelligence (AI) in healthcare. This is an active area of research, mostly focused on the development and evaluation of individual algorithms. A growing normative literature argues that AI systems should reflect human values, but it is unclear what this requires in specific AI implementation scenarios. Our objective was to understand women's values regarding the use of AI to read mammograms in breast cancer screening. Methods: We ran eight online discussion groups with a total of 50 women, focused on their expectations and normative judgements regarding the use of AI in breast screening. Results: Although women were positive about the potential of breast screening AI, they argued strongly that humans must remain as central actors in breast screening systems and consistently expressed high expectations of the performance of breast screening AI. Women expected clear lines of responsibility for decision-making, to be able to contest decisions, and for AI to perform equally well for all programme participants. Women often imagined both that AI might replace radiographers and that AI implementation might allow more women to be screened: screening programmes will need to communicate carefully about these issues. Conclusions: To meet women's expectations, screening programmes should delay implementation until there is strong evidence that the use of AI systems improves screening performance, should ensure that human expertise and responsibility remain central in screening programmes, and should avoid using AI in ways that exacerbate inequities.

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.

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.