Ethics & Human Research
Perspectives of Information Access in the Informed Consent Process for Clinical Research Participation in Australia
ABSTRACT Access to communication and information during the informed consent process for clinical research is essential for empowered decision-making. To build awareness of accessibility practices, this study aimed to explore current enablers and barriers experienced by potential research participants during informed consent procedures. A multimodal survey, capturing quantitative and qualitative data, was distributed through industry networks in Australia. The survey was open to people who had been involved in an informed consent process for a clinical research study. We collected survey data from August 2024 to January 2025. Quantitative data were reported descriptively, while qualitative data were analyzed using content analysis, with barriers and facilitators mapped to the Theoretical Domains Framework. Half of the respondents (52%) disclosed having an information access challenge impacted by vision, intersectional disability, or neurodiversity. Five themes around information access were identified: communication, information quality, assistive technology, trusted supports, and information intervals. Our research highlights some suggested actions that can support researchers and research organizations in providing accessible communication and information formats, thereby enhancing equity and inclusion in informed consent practices.
