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.

Quantification of NSW Ambulance Record Linkages with Multiple External Datasets.

This study has two aims: 1) to describe linkage rates between ambulance data and external datasets for "episodes of care" and "patient only" linkages in New South Wales (NSW), Australia; and 2) to detect and report any systematic issues with linkage that relate to patients, and operational or clinical variables that may introduce bias in subsequent studies if not adequately addressed. During 2010-11, the Centre for Health Record Linkage (CHeReL) in NSW, linked the records for patients attended by NSW Ambulance paramedics for the period July 2006 to June 2009, with four external datasets: Emergency Department Data Collection; Admitted Patient Data Collection; NSW Registry of Births, Deaths and Marriages death registration data; and the Australian Bureau of Statistics mortality data. This study reports linkage rates in terms of those "expected" to link and those who were "not expected" to link with external databases within 24 hours of paramedic attendance. Following thorough data preparation processes, 2,041,728 NSW Ambulance care episodes for 1,116,509 patients fulfilled the inclusion criteria. The overall episode-specific hospital linkage rate was 97.2%. Where a patient was not transported to hospital following paramedic care, 8.6% of these episodes resulted in an emergency department attendance within 24 hours. For all care episodes, 5.2% linked to a death record at some time within the 3-year period, with 2.4% of all death episodes occurring within 7 days of a paramedic encounter. For NSW Ambulance episodes of care that were expected to link to an external dataset but did not, nonlinkage to hospital admission records tended to decrease with age. For all other variables, issues relating to rates of linkage and nonlinkage were more indiscriminate. This quantification of the limitations of this large linked dataset will underpin the interpretation and results of ensuing studies that will inform future clinical and operational policies and practices at NSW Ambulance.

Optimal strategy for linkage of datasets containing a statistical linkage key and datasets with full personal identifiers.

BACKGROUND: Linkage of aged care and hospitalisation data provides valuable information on patterns of health service utilisation among aged care service recipients. Many aged care datasets in Australia contain a Statistical Linkage Key (SLK-581) instead of full personal identifiers. We linked hospital and death records using a full probabilistic strategy, the SLK-581, and three combined strategies; and compared results for each strategy. METHODS: Linkage of Admitted Patient Data for 2000-01 to 2008-09 and Registry of Births, Deaths and Marriages death registration data for 2008-09 for New South Wales, Australia, was carried out using probabilistic methods and compared to links created using four strategies incorporating a SLK-581. The Basic SLK-581 strategy used the SLK-581 alone. The Most Recent SLK-581, Most Frequent SLK-581, and Any Match SLK-581 strategies leveraged probabilistic links between hospital records drawn from the Centre for Health Record Linkage Master Linkage Key. Rates of hospitalisations among people who died were calculated for each strategy and a range of health conditions. RESULTS: Compared to full probabilistic linkage, the basic SLK-581 strategy produced substantial rates of missed links that increased over the study period and produced underestimates of hospitalisation rates that varied by health condition. The Most Recent SLK-581, Most Frequent SLK-581, and Any Match SLK-581 strategies resulted in substantially lower rates of underestimation than the Basic SLK-581. The Any Match SLK-581 strategy gave results closest to full probabilistic linkage. CONCLUSIONS: Hospitalisation rates prior to death are substantially underestimated by linkage using a SLK-581 alone. Linkage rates can be increased by combining deterministic methods with probabilistically created links across hospital records.

Investigating linkage rates among probabilistically linked birth and hospitalization records.

BACKGROUND: With the increasing use of probabilistically linked administrative data in health research, it is important to understand whether systematic differences occur between the populations with linked and unlinked records. While probabilistic linkage involves combining records for individuals, population perinatal health research requires a combination of information from both the mother and her infant(s). The aims of this study were to (i) describe probabilistic linkage for perinatal records in New South Wales (NSW) Australia, (ii) determine linkage proportions for these perinatal records, and (iii) assess records with linked mother and infant hospital-birth record, and unlinked records for systematic differences. METHODS: This is a population-based study of probabilistically linked statutory birth and hospital records from New South Wales, Australia, 2001-2008. Linkage groups were created where the birth record had complete linkage with hospital admission records for both the mother and infant(s), partial linkage (the mother only or the infant(s) only) or neither. Unlinked hospital records for mothers and infants were also examined. Rates of linkage as a percentage of birth records and descriptive statistics for maternal and infant characteristics by linkage groups were determined. RESULTS: Complete linkage (mother hospital record - birth record - infant hospital record) was available for 95.9% of birth records, partial linkage for 3.6%, and 0.5% with no linked hospital records (unlinked). Among live born singletons (complete linkage = 96.5%) the mothers without linked infant records (1.6%) had slightly higher proportions of young, non-Australian born, socially disadvantaged women with adverse pregnancy outcomes. The unlinked birth records (0.4%) had slightly higher proportions of nulliparous, older, Australian born women giving birth in private hospitals by caesarean section. Stillbirths had the highest rate of unlinked records (3-4%). CONCLUSIONS: This study shows that probabilistic linkage of perinatal records can achieve high, representative levels of complete linkage. Records for mother's that did not link to infant records and unlinked records had slightly different characteristics to fully linked records. However, these groups were small and unlikely to bias results and conclusions in a substantive way. Stillbirths present additional challenges to the linkage process due to lower rates of linkage for lower gestational ages, where most stillbirths occur.

Development and implementation of a national online application system for cross-jurisdictional linked data.

The Population Health Research Network (PHRN) is an Australian national data linkage infrastructure that links a wide range of health and human services data in privacy-preserving ways. The data linkage infrastructure enables researchers to apply for access to routinely collected, linked, administrative data from the six states and two territories which make up the Commonwealth of Australia, as well as data collected by the Australian Government. The PHRN is a distributed network where data is collected and managed at the respective jurisdictional and/or cross-jurisdictional levels. As a result, access to linked data from multiple jurisdictions requires complex approval processes. This paper describes Australia's approach to enabling access to linked data from multiple jurisdictions. It covers the identification of, and agreement to, a minimum set of data items to be included in a unified national application form, the development and implementation of a national online application system and the harmonisation of business processes for cross-jurisdictional research projects. Utilisation of the online application system and the ongoing challenges of data linkage across jurisdictions are discussed. Changes to the data custodian and ethics committee approval criteria were out of scope for this project.

A bespoke data linkage of an IVF clinical quality registry to population health datasets; methods and performance.

INTRODUCTION: Assisted reproductive technologies (ART), such as in-vitro fertilisation (IVF), have revolutionised the treatment of infertility, with an estimated 8 million babies born worldwide. However, the long-term health outcomes for women and their offspring remain an area of concern. Linking IVF treatment data to long-term health data is the most efficient method for assessing such outcomes. OBJECTIVES: To describe the creation and performance of a bespoke population-based data linkage of an ART clinical quality registry to state-based and national administrative datasets. METHODS: The linked dataset was created by deterministically and probabilistically linking the Australia and New Zealand Assisted Reproduction Database (ANZARD) to New South Wales (NSW) and Australian Capital Territory (ACT) administrative datasets (performed by NSW Centre for Health Record Linkage (CHeReL)) and to national claims datasets (performed by Australian Institute of Health and Welfare (AIHW)). The CHeReL's Master Linkage Key (MLK) was used as a bridge between ANZARD's partially identifiable patient data (statistical linkage key) and NSW and ACT administrative datasets. CHeReL then provided personal identifiers to the AIHW to obtain national content data. The results of the linkage were reported, and concordance between births recorded in ANZARD and perinatal data collections (PDCs) was evaluated. RESULTS: Of the 62,833 women who had ART treatment in NSW or ACT, 60,419 could be linked to the CHeReL MLK (linkage rate: 96.2%). A reconciliation of ANZARD-recorded births among NSW residents found that 94.2% (95% CI: 93.9-94.4%) of births were also recorded in state/territory-based PDCs. A high concordance was found in plurality status and birth outcome ≥99% agreement rate, Cohen's kappa ranged: 0.78-0.98) between ANZARD and PDCs. CONCLUSION: The data linkage resource demonstrates that high linkage rates can be achieved with partially identifiable data and that a population spine, such as the CHeReL's MLK, can be successfully used as a bridge between clinical registries and administrative datasets.

Lumos: a statewide linkage programme in Australia integrating general practice data to guide system redesign.

Objective: With ageing of the Australian population, more people are living longer and experiencing chronic or complex health conditions. The challenge is to have information that supports the integration of services across the continuum of settings and providers, to deliver person-centred, seamless, efficient and effective healthcare. However, in Australia, data are typically siloed within health settings, precluding a comprehensive view of patient journeys. Here, we describe the establishment of the Lumos programme-the first statewide linked data asset across primary care and other settings in Australia and evaluate its representativeness to the census population. Methods and analysis: Records extracted from general practices throughout New South Wales (NSW), Australia's most populous state, were linked to patient records from acute and other settings. Innovative privacy and security technologies were employed to facilitate ongoing and regular updates. The marginal demographic distributions of the Lumos cohort were compared with the NSW census population by calculating multiple measures of representation to evaluate its generalisability. Results: The first Lumos programme data extraction linked 1.3 million patients' general practice records to other NSW health system data. This represented 16% of the NSW population. The demographic distribution of patients in Lumos was >95% aligned to that of the NSW population in the calculated measures of representativeness. Conclusion: The Lumos programme delivers an enduring, regularly updated data resource, providing unique insights about statewide, cross-setting healthcare utilisation. General practice patients represented in the Lumos data asset are representative of the NSW population overall. Lumos data can reliably be used to identify at-risk regions and groups, to guide the planning and design of health services and to monitor their impact throughout NSW.

Investigating health effects in a community surrounding a road tunnel stack--a cross sectional study.

BACKGROUND: Extended tunnelled roadways requiring ventilation via exhaust stacks are an increasingly common solution to traffic congestion around the world. In response to community concerns about adverse health effects associated with emissions from a new road tunnel exhaust stack, despite no demonstrable change in local ambient air quality, we conducted a cross sectional study to test for an association between exposure to the exhaust stack emissions and the presence of eye, nose and throat symptoms. METHODS: Stack emissions were modelled and categorised into areas of high, medium and low levels of exposure to emissions. A telephone interview survey was conducted in these three zones. Multivariate analysis was undertaken using Cox Proportional Hazards modelling to estimate prevalence ratios between zones for eye, nose and throat symptoms. RESULTS: The prevalence of eye, nose and throat symptoms in the study area were 50 percent, 67 percent and 33 percent respectively and did not differ between the exposure zones. The presence of these symptoms was associated with a measure of reported "environmental worry". CONCLUSION: The study did not demonstrate a community wide health impact associated with modelled emissions but is unable to exclude the possibility of sensitive individuals being adversely affected.

An epidemiological investigation into an outbreak of rash illness among methadone maintenance clients in Australia.

In late 2004, NSW Health received several reports of a serious desquamating rash among clients of the methadone program. We sought to identify the extent and likely cause of this outbreak. We initiated active surveillance for cases throughout Australia, a survey of dosing points in NSW, and a case control study of clients receiving methadone syrup (MS) at two clinics. Between October 2004 and March 2005, 388 cases were identified, largely in NSW. The dosing point survey found almost all cases were clients prescribed MS (attack rate 4.5%). In multivariate analysis of data from dosing points that dispensed MS, use of take away doses or location of the dosing point in greater western Sydney were associated with illness. In the case control study, MS injection, use of street MS, high doses of MS, frequent takeaway doses, or use of benzodiazepines were associated with illness. Testing found no abnormality in associated batches of MS. Batches of MS temporally associated with the outbreak were quarantined from use and the outbreak subsided. While a direct causal link could not be established, available evidence suggests that a contaminant may have caused the outbreak. Epidemiological analyses are important for assessing concerns about product safety following marketing approval.