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Medical and health data

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Medical and health 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 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.

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.

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.

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, reused and cited.

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

Want to learn more about medical and health 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 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.

Health and medical data webinars

ANDS is hosting a series of three short 30 minutes lunchtime webinars throughout May 2017 to support better management and publication of Health and Medical data.

The webinars will address commonly held concerns from within the health and medical research field around data publication. See the Events page for more details.