PulseExploreJournal ClubDebatesTrendingResearchersJournals
Instagram
HomeExploreJournal ClubTrending
Synapse
⌘+K
Synapse
May 6, 2026Ethics & Human Research0 citationsOpen Access

Perspectives of Information Access in the Informed Consent Process for Clinical Research Participation in Australia

View Full Paper
FOFleur O’HareLALauren N. AytonDFDavid Foran

Key Points

  • This research explores barriers and facilitators affecting information access during the informed consent process for clinical research.
  • Multimodal survey distributed through industry networks in Australia.
  • Survey participants were individuals involved in an informed consent process for clinical research.
  • Quantitative data reported descriptively; qualitative data analyzed using content analysis.
  • 52% of respondents reported challenges in information access related to vision, disability, or neurodiversity.
  • Identified themes include communication, information quality, assistive technology, and trusted supports.

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.

Ask AI
Helpful
Bookmark
Share
View Full Paper

Cite This Study

O’Hare et al. (2026) studied this question.

synapsesocial.com/papers/69faa2e204f884e66b533819https://doi.org/10.1002/eahr.70011
Ask AI
Helpful
Bookmark
Share
View Full Paper