The Lumos Pilot Project: Feasibility of Linking General Practice Data to Other Health-Related Data

Abstract

Introduction Delivering integrated care is an aspiration of health systems around the world. General Practices (GPs) operate between other types of health care and are therefore key to effective integrated care. However, information to understand the patient journey across the health system, such as between primary and acute care, is currently impeded in Australia by lack of interoperable clinical software, privacy concerns, and cross-jurisdictional barriers. This presents a challenge to the formation of an evidence base for the design and implementation of integrated health services. Objectives and Approach The Lumos Pilot Project aims to address these challenges. Following ethics approval in February 2016, the pilot was rolled out over five stages to develop a proof of concept for extracting and linking GP data to other health-related data. The objectives were to: I. Build cross-jurisdictional collaborations between primary care and the state health system in New South Wales (NSW), Australia. II. Develop methodologies to address confidentiality requirements. III. Develop technological solutions that will allow for a large scale program. Results Data were extracted from 102 GPs, covering nearly 1 million patients, and linked to emergency department, hospital and mortality records. GPs were recruited to participate through collaborations with all NSW Primary Health regions. Privacy preserving record linkage was successfully implemented in the fifth stage of the project. This process encoded patient identifiers prior to extraction from the GP and negated the need for identified information during data linkage. Software was developed and tested across all stages of the project so that once enrolled, GP data extraction and transfer were fully automated. Conclusion / Implications The resultant dataset has provided a new picture of patients’ healthcare journeys while preserving patient privacy. The technological solutions allow for a large scale up of GP recruitment in future.