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Health and medical data

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Health and medical data, including clinical data and clinical trials are a type of sensitive data.

There are privacy issues to consider when a researcher wants to access or share health and medical data. The consideration of ownership, ethical issues, and legislation can be daunting. The good news is that sensitive data that has been de-identified can be shared.

Examples include:

Advice on sharing sensitive medical data

ANDS has comprehensive Guides giving practical advice and exploring ethical considerations around publishing and sharing sensitive data. These Guides will assist clinical researchers, and those who support them, to de-identify and publish sensitive data with confidence. See these resources on the right hand side of this page.

Publishing sensitive medical data

An increasing number of medical journals now require or request access to underlying research data when submitting or publishing articles. Planning to publish your data from the beginning of your project or clinical trial will help your workflow and reduce the burden at the end of your project.

Where to publish? First check to see if you have an institutional or discipline repository for your data. Scientific Data (published by Nature Publishing Group) has a list of recommended health data repositories.

Describing health and medical data

If you are describing data for deposit in a database or repository, you may find existing standards and protocols helpful, to ensure consistency with national and international best practice. Richly described data is more likely to be found, reused and cited.

ANDS' website also contains more information about metadata and vocabularies.

ORCID

ORCID provides a persistent digital identifier that supports automated linkages between researchers and their professional activities ensuring that their work is recognised. It integrates key research workflows such as manuscript and grant submissions enabling the construction of a full record of research outputs.

ORCID has created partnerships with their members to allow users to import publications and other works into their ORCID record from outside databases.

Data linkage

Many medical researchers are interested in accessing and linking data from resources such as health services.

Want to learn more about health and medical data?

ANDS has adapted its 23 (research data) Things to create 10 medical and health research data Things. This is a self paced learning program that explores important aspects of managing health and medical data.

See our Skills section to explore training resources and ideas to enhance your data knowledge, or a training program at your institution.

Email contact@ands.org.au to talk to us about holding an online ‘Health-y data’ workshop for your institution or region.