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Medical and health data

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Medical and health data

Medical and health data, including clinical data, clinical trials etc., are a type of sensitive data.

There are privacy issues to consider when a researcher wants to access or share medical and health 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. Here are some examples:

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.

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 / clinical trial will help your workflow and reduce the burden at the end of your project.

Describing medical and health 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, re-used and cited.

  • See this (2:29 min) video about medical metadata
  • Flick through these slides about using controlled vocabularies in medical and health research

Want to know more about metadata and vocabularies? We may be able to help you with more information about describing medical and health data, contact us to start the discussion.

10 medical and health research data Things

We have adapted our 23 (research data) Things to create the 10 medical and health research data Things. This is a self paced learning program that explores important aspects of managing medical and health data.

During 23 (research data) Things, ANDS hosted a virtual community group specifically for people working with health, clinical and medical data. Recordings were made of these webinars, and are available through a private youtube link. Please email us if you would like to receive them.

Data de-identification Guide