Suchergebnisse

IntroductionLarge volumes of health data are generated through the interaction of individuals with hospitals, government agencies and health care providers. There is potential in the linkage and sharing of administrative data with private industry to support improved drug and device provision but data sharing is highly contentious.
Objectives and ApproachWe conducted a scoping review of quantitative and qualitative studies examining public attitudes towards the sharing of health data, held by government, with private industry for research and development. We searched four data bases, PubMed, Scopus, Cinahl and Web of Science as well as Google Scholar and Google Advanced. The search was confined to English-only publications since January 2014 but was not geographically limited. We thematically coded included papers.
ResultsWe screened 6788 articles. Thirty-six studies were included primarily from UK and North America. No Australian studies were identified. Across studies, willingness to share non-identified data was generally high with the participant's own health provider (84-91%) and academic researchers (64-93%) but fell if the data was to be shared with private industry (14-53%). There was widespread misunderstanding of the benefits of sharing data for health research. Publics expressed concern about a range of issues including data security, misuse of data and use of data to generate profit. Conditions which would increase public confidence in sharing of data included: strict safeguards on data collection and use including secure storage, opt-in or opt-out consent mechanisms, and good communication through trusted agents.
Conclusion / ImplicationsWe identified a research gap: Australian views on sharing government health data with private industry. The international experience suggests that public scepticism about data sharing with private industry will need to be addressed by good communication about public benefit of data sharing, a strong program of public engagement and information sharing conducted through trusted entities.

Abstract 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.

Introduction"The Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research", recent data breaches, and growing public awareness and controversy associated with secondary use of health data all highlight the need to understand what data sharing the public will support, under what circumstances, for what purposes and with whom.
Objectives and ApproachThis symposium explores methods and findings from public engagement at all stages of data linkage research, beginning with short presentations (~6-8 minutes) on recent work:

Mhairi Aitken: Consensus Statement - principles and an application using deliberative workshops to explore public expectations of public benefits from data-intensive health research
Annette Braunack-Mayer/Felicity Flack: Surveys and citizens' juries: Sharing government data with private industry
Kim McGrail/Mike Burgess: Public deliberations on cross-sector data linkage, and combining public and private sources of data
Alison Paprica: Plain language communication informed by Health Data Research Network Canada's Public Advisory Council.

Half the session will be spent interacting with the audience through live polling. The moderator will post a series of poll question such as "What is the most important thing for meaningful public engagement?" to prompt audience thinking on the topic. After the audience responses are revealed, panelists will share their own views about what they think is the best answer, and the main reason(s) behind their choice. The last 10-15 minutes of the session will be reserved for Q&A and dialogue with the audience.
ResultsWe anticipate that this approach will surface emerging and tacit knowledge from presenters and the audience, and augment that through generative discussion.
Conclusion / ImplicationsSession attendees will leave with a better understanding of the current state of knowledge and ways to talk about that understanding with other researchers, policy makers and the public.

IntroductionLarge administrative datasets are now being used for secondary purposes across a wide range of public sector organisations, including in health and higher education. However, governance, regulation and policy surrounding the use of these datasets are at different stages of development in these sectors. Our aim was to explore similarities and differences in the use of administrative data between the health and higher education sectors to inform policy development.
Objectives and ApproachWe investigated views on the use of administrative data in both the health and higher education sectors. We conducted 18 qualitative in-depth interviews with key stakeholders, to provide insight into the ethical, social and legal issues associated with the use of big data in these settings. The interviews were transcribed and thematically coded.
ResultsParticipants indicated the rapid pace of technological change and large volume of potentially sensitive data collected raises governance, infrastructure and ethical issues in both settings. Common challenges include communication, staff capabilities, delays in access, multiple policies and governance committees, and technical and operational issues. In the health sector, there was clear understanding of the issues and governance structures to address these issues, whereas this understanding was more variable in the higher education sector. Trust in government (to use responsibly and store securely) was raised in the health sector but not in universities.
Conclusion / ImplicationsUnderstanding and use of administrative data are at quite different levels of development in the higher education and health sectors. Higher education needs policy and ethical guidance and higher level governance and greater consultation across the sector. Both sectors would benefit from a national approach to data governance.

BACKGROUND: Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies – pathogen whole genome sequencing (WGS) and Big Data analytics – promise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy. METHOD: making pathogen WGS and linked administrative data available for public health research; using this information in concert with data linkage and machine learning to enhance communicable disease surveillance systems. Fifty participants of diverse backgrounds, mixed genders and ages were recruited by random-digit-dialling and topic-blinded social-media advertising. Each jury was presented with balanced factual evidence supporting different expert perspectives on the potential benefits and costs of technologically enhanced public health research and communicable disease surveillance and given the opportunity to question experts. RESULTS: Almost all jurors supported data linkage and WGS on routinely collected patient isolates for the purposes of public health research, provided standard de-identification practices were applied. However, allowing this information to be operationalised as a syndromic surveillance system was highly contentious with three juries voting in favour, and one against by narrow margins. For those in favour, support depended on several conditions related to system oversight and security being met. Those against were concerned about loss of privacy and did not trust Australian governments to run secure and effective systems. CONCLUSIONS: Participants across all four events strongly supported the introduction of data linkage and pathogenomics to public health research under current research governance structures. Combining pathogen WGS with event-based data surveillance systems, however, is likely to be controversial because of a lack of public trust, ...

Background: Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies – pathogen whole genome sequencing (WGS) and Big Data analytics – promise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy. Method: Four community juries were convened in two demographically different Sydney municipalities and two regional cities in New South Wales, Australia (western Sydney, Wollongong, Tamworth, eastern Sydney) to elicit the views of well-informed community members on the acceptability and legitimacy of: - making pathogen WGS and linked administrative data available for public health research - using this information in concert with data linkage and machine learning to enhance communicable disease surveillance systems Fifty participants of diverse backgrounds, mixed genders and ages were recruited by random-digit-dialling and topic-blinded social-media advertising. Each jury was presented with balanced factual evidence supporting different expert perspectives on the potential benefits and costs of technologically enhanced public health research and communicable disease surveillance and given the opportunity to question experts. Results: Almost all jurors supported data linkage and WGS on routinely collected patient isolates for the purposes of public health research, provided standard de-identification practices were applied. However, allowing this information to be operationalised as a syndromic surveillance system was highly contentious with three juries voting in favour, and one against by narrow margins. For those in favour, support depended on several conditions related to system oversight and security being met. Those against were concerned about loss of privacy and did not trust Australian governments to run secure and effective systems. Conclusions: Participants across ...

Objective: To provide insights into complexities of seeking access to state and federal cross-jurisdictional data for linkage with the Australian Childhood Immunisation Register (ACIR). We provide recommendations for improving access and receipt of linked datasets involving Australian Government-administered data. Methods: We describe requirements for linking eleven federal and state data sources to establish a national linked dataset for safety evaluation of vaccines. The required data linkage methodology for integrating cross-jurisdictional data sources is also described. Results: Extensive negotiation was required with 18 different agencies for 21 separate authorisations and 12 ethics approvals. Three variations of the 'best practice' linkage model were implemented. Australian Government approval requests spanned nearly four years from initial request for data, with a further year before ACIR data transfer to the linkage agency. Conclusions: Integration of immunisation registers with other data collections is achievable in Australia but infeasible for routine and rapid identification of vaccine safety concerns. Lengthy authorisation requirements, convoluted disparate application processes and inconsistencies in data supplied all contribute to delayed data availability. Implications for public health: Delayed data access for safety surveillance prevents timely epidemiological reviews. Poor responsiveness to safety concerns may erode public confidence, compromising effectiveness of vaccination programs through reduced participation.

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.