ArticleBMJ health & care informatics2025
Sharing data matters: exploring the attitudes of older consumers on an emerging healthy ageing data platform using electronic health records for research.
Article in BMJ health & care informatics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed.
- Attitudes of Longitudinal Study Participants and Members of the Public Towards Data Sharing for Secondary Research: A Survey Based Approach.Journal of empirical research on human research ethics : JERHRE · 2026Article
- HealthData@MAD-R&I: Protocol for Design and Development of a Regional Health Data Infrastructure to Enable Secondary Use of Health Data in Research and Innovation.JMIR research protocols · 2026Article
- Evolutionary game analysis of healthcare data governance in China's experimental data trading pilots.NPJ digital medicine · 2025Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIn Australia, with the recent introduction of electronic health records (EHRs) into hospitals, the use of hospital-based EHRs for research is a relatively new concept. The aim of this study was to explore the attitudes of older healthcare consumers on sharing their health data with an emerging EHR-based Research Data Platform within the National Centre for Healthy Ageing.
methodsThis was a qualitative study. Two workshops were conducted in March 2022 with consumer representatives across Peninsula Health, Victoria, Australia. The workshops comprised three parts: (1) an ice-breaker (2) an introduction to EHR-based research through the presentation of 'use case' scenarios and (3) focus group discussions. Qualitative data were analysed using reflexive thematic analysis.
resultsConsumer participants (n=16) were aged between 62 and 83 years and were of mixed gender. The overarching theme was related to trust in the use of EHR data for research; themes included: (1) benefits of sharing data, (2) uncertainty around data collection processes and (3) data sharing fears. The three themes within the overarching theme all reflect participants' levels of trust.
conclusionOur study identified fundamental issues related to trust in the use of EHR data for research, with both healthcare and broader societal factors contributing to consumer attitudes. Processes to support transparent and clear communication with consumers are essential to support the responsible use of EHR data for research.
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