Want to learn more about medical and health data?
- Discover the 10 medical and health research data Things
- A self directed learning program
- For individual or group settings
- Extend or contract it to meet your specific research data knowledge needs
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:
- Openly shared de-identified data e.g. 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.
- Australian Longitudinal Study on Women’s Health (ALSWH) - a large, national research resource.
- Epidemiology of chronic ankle problems in the community dataset – outcome from a single research project.
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.
- Sensitive data: publishing and sharing - ANDS guide | Related info | YouTube playlist
- Data sharing considerations for Human Research Ethics Committees (HRECs) - ANDS guide | Related info | Poster
- De-identification - ANDS Guide
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.
- 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 with advice: 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, 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
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.
ANDS plans to host webinars on issues around medical and health data management in 2017. Sign up to our email newsletter, ANDS News, to stay in touch with us and be notified of our latest events and webinars.