Process trumps potential public good: better vaccine safety through linked cross‐jurisdictional immunisation data in Australia

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.     

Data linkage capabilities in Australia: practical issues identified by a Population Health Research Network ‘Proof of Concept project’

Objective: To describe the practical issues that need to be overcome to conduct national data linkage projects in Australia and propose recommendations to improve efficiency. Methods: Review of the processes, documentation and applications required to conduct national data linkage in Australia. Results: The establishment of state and national data linkage centres in Australia has placed Australia at the forefront of research linking health‐related administrative data collections. However, improvements are needed to reduce the clerical burden on researchers, simplify the process of obtaining ethics approval, improve data accessibility, and thus improve the efficiency of data linkage research. Conclusions: While a sound state and national data linkage infrastructure is in place, the current complexity, duplication and lack of cohesion undermines any attempts to conduct research involving national record linkage in a timely manner. Implications: Data linkage applications and Human Research Ethics Committee approval processes need to be streamlined and duplication removed, in order to reduce the administrative and financial burden on researchers if national data linkage research is to be viable.     

Establishing a process for conducting cross‐jurisdictional record linkage in Australia

Objective: To describe the realities of conducting a cross‐jurisdictional data linkage project involving state and Australian Government‐based data collections to inform future national data linkage programs of work. Methods: We outline the processes involved in conducting a Proof of Concept data linkage project including the implementation of national data integration principles, data custodian and ethical approval requirements, and establishment of data flows. Results: The approval process involved nine approval and regulatory bodies and took more than two years. Data will be linked across 12 datasets involving three data linkage centres. A framework was established to allow data to flow between these centres while maintaining the separation principle that serves to protect the privacy of the individual. Conclusions: This will be the first project to link child immunisation records from an Australian Government dataset to other administrative health datasets for a population cohort covering 2 million births in two Australian states. Implications: Although the project experienced some delays, positive outcomes were realised, primarily the development of strong collaborations across key stakeholder groups including community engagement. We have identified several recommendations and enhancements to this now established framework to further streamline the process for data linkage studies involving Australian Government data.     

Exploring parental country of birth differences in the use of psychostimulant medications for ADHD: a whole‐population linked data study

Objective: To explore parental country of birth differences in the use of stimulants for attention deficit hyperactivity disorder (ADHD) in Western Australian (WA) children and adolescents. Methods: Statutory WA stimulant notification and dispensing records from 2003 to 2007 were linked to whole‐population state data from 1980 to 2007. Parental attributes were obtained through the WA Family Connections genealogical linkage system. Using multivariate logistic and linear regression, the differences in WA stimulant use for ADHD by parental country of birth, socioeconomic status and geographical remoteness were examined. Results: Of 671,231 people born in WA between 1980 and 2007, 13,555 (2%) used stimulants for ADHD. Of these, 734 (5%) had parents born in Africa, Asia, the Middle East or South America, and 12,006 (87%) had parents born in Australia, North America and Europe. Children and adolescents with parents born in traditionally non‐Anglophonic countries were less likely to be treated with stimulants (OR=0.17, 95%CI 0.14–0.21) than those with parents born in Anglophonic countries. Socioeconomic advantage and residential remoteness were also significant independent predictors of a decreased likelihood of stimulant use. Conclusions: The results highlight the importance of improving knowledge about cultural differences in access to and attitudes towards the diagnosis of ADHD and different approaches to its treatment.     

Data linkage for injury surveillance and research in Australia: perils,pitfalls and potential

Objective : To outline some of the key issues for injury‐related data linkage studies in Australia and describe potential applications of data linkage for injury surveillance and research. Methods : Narrative review of data linkage capacity and injury‐related data collection quality in Australia. Results : The establishment of national and state‐based data linkage centres in Australia has been a great leap forward for data linkage capacity for injury research. However, there are still limitations of using data linkage for injury surveillance and research. These are highlighted in the form of key perils and pitfalls, with examples provided. There is still much to be gained for injury research by using data linkage techniques to enhance the information available across the injury continuum, but data quality issues should always be acknowledged. Conclusions : Obtaining authorisation to link injury data collections for national research remains cumbersome. Streamlining of the application process is needed to ensure that injury research is able to be conducted in a timely fashion. Data quality and data linkage rates need to be considered when interpreting research findings. Implications : Streamlining of the application process for research that involves linking data collections would help ensure that research is conducted in a timely fashion.     

Implementing a national approach to universal child and family health services in Australia: professionals' views of the challenges and opportunities

Australia has a well‐accepted system of universal child and family health (CFH) services. However, government reports and research indicate that these services vary across states and territories, and many children and families do not receive these services. The aim of this paper was to explore professionals' perceptions of the challenges and opportunities in implementing a national approach to universal CFH services across Australia. Qualitative data were collected between July 2010 and April 2011 in the first phase of a three‐phase study designed to investigate the feasibility of implementing a national approach to CFH services in Australia. In total, 161 professionals participated in phase 1 consultations conducted either as discussion groups, teleconferences or through email conversation. Participants came from all Australian states and territories and included 60 CFH nurses, 45 midwives, 15 general practitioners (GPs), 12 practice nurses, 14 allied health professionals, 7 early childhood education specialists, 6 staff from non‐government organisations and 2 Australian government policy advisors. Data were analysed thematically. Participants supported the concept of a universal CFH service, but identified implementation barriers. Key challenges included the absence of a minimum data set and lack of aggregated national data to assist planning and determine outcomes; an inconsistent approach to transfer of information about mothers and newborns from maternity services to CFH nursing services or GPs; poor communication across disciplines and services; issues of access and equity of service delivery; workforce limitations and tensions around role boundaries. Directions for change were identified, including improved electronic data collection and communication systems, reporting of service delivery and outcomes between states and territories, professional collaboration, service co‐location and interprofessional learning and development.     

Use of data linkage to improve communicable disease surveillance and control in Australia: existing practices,barriers and enablers

Objectives: To review the use of data linkage by Australian state and territory communicable disease control units, and to identify barriers to and enablers of data linkage to inform communicable disease surveillance and control activities. Methods: Semi‐structured telephone interviews were carried out with one key informant from communicable disease control units in all eight Australian states and territories between October 2017 and January 2018. Results: Key informants from all Australian states and territories participated in the interview. A variety of existing practices were identified, with few jurisdictions making systematic use of available data linkage infrastructure. Key barriers identified from the review included: a lack of perceived need; system factors; and resources. Existing regulatory tools enable data linkage to enhance communicable disease surveillance and control. Conclusions: We identified considerable variation in the use of data linkage to inform communicable disease surveillance and control activities between jurisdictions. We suggest that routinely collected, disparate data are systematically integrated into existing surveillance and response policy cycle to improve communicable disease prevention and control efforts. Implications for public health: Existing gaps in communicable disease surveillance data may affect prevention and control efforts. Data linkage is recognised as a valuable method to close surveillance gaps and should be used to enhance the value of publicly held health data.     

Challenges in recruitment to an epidemiological study of young Australian women: the Grollo‐Ruzzene Foundation Young Women’s Health Study

Objective : To describe the challenges in recruitment of a national sample of young Australian women for a study of their physical and psychological wellbeing. Methods : Women, aged 18 to 39 years, were invited by email to complete an online questionnaire and, if not using systemic hormones, pregnant or breast feeding, to provide a blood sample. Results : A total of 94,546 email invitations were sent. Follow‐up of 1,000 randomly selected non‐responders by text message recruited 15 additional women. Direct telephoning resulted in another 516 completed questionnaires from a further 3,614 randomly selected non‐responders. In all, 6,986 women completed the questionnaire and blood samples were provided by 761 (20.6%) of 3,689 eligible participants. The study sample is similar to women within the target age range captured by the Australian Census for their state of residence in terms of age distribution, education, relationship status, employment and occupation. Conclusions : Recruitment, by predominantly electronic means, has achieved a large, representative study sample of young women recruited from the eastern states of Australia. Implications for public health : Recruitment of a representative study sample can be achieved in the absence of a high response rate.     

Development and validation of reporting guidelines for studies involving data linkage

Objective: Data or record linkage is commonly used to combine existing data sets for the purpose of creating more comprehensive information to conduct research. Linked data may create additional concerns about error if cases are not linked accurately. It is important that factors compromising the quality of studies using linked data be reported in a clear and consistent way that allows readers and researchers to accurately appraise the results. The aim of this study was to develop and test reporting guidelines for evaluating the methodological quality of studies using linked data. Method: The development process included a literature review, a Delphi process and a validation process. Participants in the process were all Australian and included biostatisticians, epidemiologists, registry administrators, academic clinicians and a peer‐reviewed journal editor. Results: The final guidelines included four domains and 14 reporting items. These included: data sources (six items), research selected variables (four items), linkage technology and data analysis (three items), and ethics, privacy and data security (one item). Conclusion: This study is the first to develop guidelines for appraising the quality of reported data linkage studies. Implications: These guidelines will assist authors to report their results in a consistent, high‐quality manner. They will also assist readers to interpret the quality of results derived from data linkage studies.