Health research governance of data access: a black-box challenge
This article addresses organisational governance, including perceived reputational concerns, by health data custodians as the principal barrier to timely and transparent research. Although existing literature primarily addresses ethics reviews and site-specific research approvals, our experience with a Local Hospital Network uncovered additional active barriers within this complex health system. We position these experiences in relation to literature that has documented inefficiencies in health research governance processes that lead to lost knowledge capital and opportunities for significant advancements in health systems research.
Authors
- Janet Mary Davies (ORCID: https://orcid.org/0000-0002-6378-4119)
- Christina Malatzky (ORCID: https://orcid.org/0000-0002-9078-9601)
- Diana Leon‐Espinoza (ORCID: https://orcid.org/0000-0002-2874-9166)
- Paula K. McDonald (ORCID: https://orcid.org/0000-0002-3549-4691)
- Robyn Mayes (ORCID: https://orcid.org/0000-0002-8661-3638)
- Alicia Feldman (ORCID: https://orcid.org/0000-0002-0210-1847)
- Peter Frederiksen (ORCID: https://orcid.org/0000-0003-3712-7980)
Institutions
- Queensland University of Technology (AU)
- Générale de Santé (FR)
Publication Details
- Journal
- Australian Health Review
- Published
- 2025-02-24
- DOI
- https://doi.org/10.1071/ah24341
- Primary Topic
- Ethics in Clinical Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00