Developing a linked electronic health record derived data platform to support research into healthy ageing

Abstract

IntroductionDigitalisation of Electronic Health Record (EHR) data has created unique opportunities for research. However, these data are routinely collected for operational purposes and so are not curated to the standard required for research. Harnessing such routine data at large scale allows efficient and long-term epidemiological and health services research. ObjectivesTo describe the establishment a linked EHR derived data platform in the National Centre for Healthy Ageing, Melbourne, Australia, aimed at enabling research targeting national health priority areas in ageing. MethodsOur approach incorporated: data validation, curation and warehousing to ensure quality and completeness; end-user engagement and consensus on the platform content; implementation of an artificial intelligence (AI) pipeline for extraction of text-based data items; early consumer involvement; and implementation of routine collection of patient reported outcome measures, in a multisite public health service. ResultsData for a cohort of >800,000 patients collected over a 10-year period have been curated within the platform's research data warehouse. So far 117 items have been identified as suitable for inclusion, from 11 research relevant datasets held within the health service EHR systems. Data access, extraction and release processes, guided by the Five Safes Framework, are being tested through project use-cases. A natural language processing (NLP) pipeline has been implemented and a framework for the routine collection and incorporation of patient reported outcome measures developed. ConclusionsWe highlight the importance of establishing comprehensive processes for the foundations of a data platform utilising routine data not collected for research purposes. These robust foundations will facilitate future expansion through linkages to other datasets for the efficient and cost-effective study of health related to ageing at a large scale.

Staying Active with Multimorbidity In Acute hospital settings (StAMInA) trial: protocol for a feasibility randomised controlled trial of allied health assistant mobility rehabilitation for patients with multimorbidity

“…Patient and organisational data will be routinely collected (ie, documented in patient medical records, and hospital costing data systems) with the exception of physical activity, functional activity and patient satisfaction survey, which will be administered by an assessor blind to group allocation. Routinely collected data, with the exception of daily mobilisation, will be collected via the National Centre for Healthy Ageing, Healthy Ageing Data Platform, which curates high-quality data from the health network electronic medical record and costing data system 36. Routinely collected data on daily mobilisation will be collated by a researcher who is also blind to group allocation; to ensure the quality of this data, we will use a data collection template, categorise data items relating to daily mobilisation (eg, mobilised yes/no, mobilised by assistant/physiotherapist/nurse) and provide training to the data extractor 37…”

“…Routinely collected data, with the exception of daily mobilisation, will be collected via the National Centre for Healthy Ageing, Healthy Ageing Data Platform, which curates high-quality data from the health network electronic medical record and costing data system. 36 Routinely collected data on daily mobilisation will be collated by a researcher who is also blind to group allocation; to ensure the quality of this data, we will use a data collection template, categorise data items relating to daily mobilisation (eg, mobilised yes/no, mobilised by assistant/physiotherapist/nurse) and provide training to the data extractor. 37 Staff involved in the implementation of mobility rehabilitation will be interviewed by a member of the research team, either face-to-face or via video-conferencing (eg, Zoom).…”