Primary Care Data, Linkage and Capacity Building
Secondary use, including data linkage, of primary care datasets has the capacity to help researchers and policymakers better understand the patient journey through the health system. However, yet the project-by-project nature of most ‘secondary use’ (using data for a purpose other than what it was originally collected for) means there is no national picture of what data are being used, where, by whom, how data are collected, to what level of granularity, nor the barriers to and benefits of its collection and use. This mixed methods study was part of a larger workplan of the Australian Health Research Alliance (AHRA); it aimed to gain a deeper understanding of the availability and secondary use of primary care data (primarily general practice data) across Australia and of what is required to build capacity for data-driven healthcare improvement.
Australian Government Medical Research Future Fund (MRFF) grant to the Australian Health Research Alliance (AHRA) via the Melbourne Academic Centre for Health (MACH)
Using survey and interview data, 30 data custodians and 32 data users collectively named 106 datasets from eclectic sources, indicating a broad conceptualisation of what a primary care dataset available for secondary use was. There was no ‘standard’ data quality framework used. The large number of Australian datasets nominated suggests duplication of effort around data collection, preparation and use. However, many benefits of secondary use of primary care data were described, but limitations and barriers to access and use told of poor data quality, concern around lack of understanding of data context and its complexity; ‘arduous’ governance processes; lack of leadership and quality standards; technical, ethical and health systems complexities; and fear of privacy breach. Building trust between the public, clinicians, third party data custodians and data end-users was considered to be a key enabler to improve primary care data quality and efficiencies related to secondary use. Trust building qualities included transparency, strong leadership, meaningful stakeholder engagement, shared vision, robust data security and privacy protection. To improve capacity for primary care data access and use, resources are required for training and education, incentivising, data collection tool improvements, workforce upskilling and making data access more affordable.
Canaway R, Boyle D, Manski-Nankervis J-A, Gray K. (2020) Primary Care Data and Linkage: Australian dataset mapping and capacity building. A report from the Melbourne Academic Centre for Health for the Australian Health Research Alliance, pp.54
Canaway, R., Boyle, D., Manski-Nankervis, JA. et al. Identifying primary care datasets and perspectives on their secondary use: a survey of Australian data users and custodians. BMC Med Inform Decis Mak 22, 94 (2022).