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.
- Openly shared de-identified data such as the Pregnancy and Lifestyle Study
- Mediated access, where someone wanting to use the data has to apply to the owner of the data, giving their reasons for use, such as the Australian Longitudinal Study on Women’s Health (ALSWH) and the Epidemiology of chronic ankle problems in the community dataset.
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.
- ANDS Guide - Data sharing considerations for Human Research Ethics Committees (HRECs)
- Ethics and data overview
- Sensitive data overview
- ANDS Guide to publishing and sharing sensitive data
- Sensitive data playlist on ANDS' YouTube channel
- ANDS Guide to de-identifying your data
- Ethics and data poster
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.
- Example journal policies: PLOS journals' policy on making all data available “with rare exception”.
- The BMJ requires data sharing on request for all trials.
- Paper: Preparing raw clinical data for publication: guidance for journal editors, authors, and peer reviewers BMJ 2010;340:c181, Iain Hrynaszkiewicz et al.
- Where to publish? First check to see if you have an institutional or discipline repository for your data. Also, 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.
- Standards for medical health data (ANDS' slides)
- Controlled vocabularies in medical and health research (ANDS' slides)
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.