Understanding Australian Consumers' Views on Health Information Use in Research: Systematic Review Protocol

Background Understanding consumers' and patients' expectations, perspectives, and understandings regarding the use of their health information for research purposes is essential to aligning research practices with public values and fostering trust in the research process. Objectives This unique systematic review aims to synthesise the existing literature on consumers' and patients' expectations regarding the use of their health information for research purposes in Australia, providing a comprehensive understanding of this crucial aspect of the research process. Methods A comprehensive search of electronic databases, including MEDLINE, EMBASE, Web of Science, and Scopus, for studies published in English from 2018 onwards will be conducted. Additionally, we will perform a grey literature search and screen Google Scholar. Studies will be screened and selected based on predefined inclusion and exclusion criteria. Data will be extracted, and the quality of included studies will be assessed using the Joanna Briggs Institute critical appraisal tools. A thematic synthesis approach will be used to analyse and summarise the data. Consumers will be engaged in multiple stages to guarantee that the research process is responsive to their concerns and reflects their viewpoints. Discussion The findings will provide insights into the transparency of the research process, consent, ownership, privacy protection, and limitations to using health data in research as perceived by consumers in Australia. This review will inform policymakers and researchers about public expectations and enhance ethical practices in health data usage for research. Systematic Review Registration: PROSPERO CRD42024514557