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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.

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 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.

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.

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 held a series of short webinars throughout May 2017 to support better management and publication of Health and Medical data.

They addressed commonly held concerns from within the health and medical research field around data publication.

The topics covered were:

  1. Funders and publishers (9 May 2017)
  2. Storing and publishing health and medical data (16 May 2017)
  3. Ethics, legal issues and data sharing (23 May 2017)

Video recordings and slides from each of the events can be viewed via the Health and medical data webinar series page.