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

Abstract

ObjectiveWith 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 analysisRecords 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.ResultsThe 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.ConclusionThe 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.

Value‐based primary care in Australia: how far have we travelled?

“…These insights are translated into knowledge and interventions aimed at improving outcomes for people with undiagnosed chronic conditions. 15 The initiatives that we have explored here are promising early enablers of value-based health care, but the health system still lacks some important registries, processes and systems. These include: national disease registries; a systematised collection of outcome measures (with standardisation) to facilitate meaningful understanding of unwarranted variation; and a means of costing care pathways across the health system, including out-of-pocket costs incurred by consumers and other hidden costs.…”

“…Lumos (https://www.health.nsw.gov.au/lumos) is a more ambitious program of work that links anonymised general practice data to secondary care and tertiary care datasets to provide insights into patient journeys across the care pathway. These insights are translated into knowledge and interventions aimed at improving outcomes for people with undiagnosed chronic conditions 15 …”

Australian general practitioner perceptions to sharing clinical data for secondary use: a mixed method approach

“…Several international jurisdictions have invested considerably in developing health system infrastructures for collecting and integrating general practice data, some of which include the recently launched GPDPR [10] as part of UK's NHS Digital; Scotland's SPIRE service [11]; Wales' SAIL databank [12]; Denmark's eSundhed [13]; Canada's POPLAR network [14]; and New Zealand's IDI [15]. Australia has undertaken similar implementation initiatives such as NPS Medi-cineInsight [16][17][18], LUMOS [19] and general practice data collected through the Primary Health Networks [18]. However, apart from New Zealand where all practice data is collected centrally, there has been limited success in attracting general practices to share their data beyond its use in direct care delivery.…”

Creating person‐centred health care value together

“…Too often when it comes to quality and patient safety there is a lack of connected datasets to inform and guide understanding and learning 14 . Early insights from initiatives linking datasets between primary and tertiary care demonstrate promising potential, including the positive effects of primary care in reducing readmissions and improving outcomes for people with undiagnosed chronic conditions such as chronic kidney disease and diabetes 15 . Appropriate innovative funding models are necessary to enable person‐centred outcomes.…”

“…14 Early insights from initiatives linking datasets between primary and tertiary care demonstrate promising potential, including the positive effects of primary care in reducing readmissions and improving outcomes for people with undiagnosed chronic conditions such as chronic kidney disease and diabetes. 15 Appropriate innovative funding models are necessary to enable person-centred outcomes. These models also need to consider resource allocation and local approaches to deliver coordinated care that is as close as possible to where people live and focuses on prevention and improvement rather than a one-size-fits-all approach.…”