Sharing data matters: exploring the attitudes of older consumers on an emerging healthy ageing data platform using electronic health records for research.

Abstract

Background: In 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.

Methods: This 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.

Results: Consumer 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.

Conclusion: Our 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.