Clinical Guides: Data Collection and Storage: Privacy & Confidentiality

Data sharing in research refers to the practice of making research data available to other researchers, institutions, or the public to enhance transparency, reproducibility, and collaboration. Data sharing should adhere to privacy and confidentiality principles.

Why is it important?

Sharing your data safely:

Allows other researchers to verify findings and reproduce studies.
Encourages new discoveries by enabling secondary analysis and data integration.
Reduces duplication of research efforts and enhances the value of collected data.
Demonstrates responsible research practices, particularly for publicly funded studies.
May align with funder, journal, or institutional policies on open science and data accessibility.

How to share data ethically and legally

Abide by all regulartory and organisational policies.
- The Privacy Act 1988 (Cth)
- National Statement on Ethical Conduct in Human Research
- Monash Health polices on PROMPT
Seek Human Ethics approval, if necessary.
Ensure that participants' personal details are not disclosed without consent.
Removing or code identifiable information to protect participants' identities.
Inform participants on how their data will be collected, stored, and shared before they agree to take part in a study.
Use encryption, secure storage, and controlled access to prevent unauthorised access or breaches.

Recommended resources:

Australian Research Data Commons (ARDC). (n.d.) Medical and health sciences resources.
Australian Research Data Commons (ARDC). (2017) Legal and ethics - health & medical data.
UK Data Archive. (2011). Managing and sharing data.

NYU Health Sciences Library. (2013). Data Sharing and Management Snafu in 3 Short Acts.

Privacy and confidentiality