- Course overview
- Search within this course
- What is publicly available data?
- Finding publicly available data
- Using public data in your research
- Data sharing and submission
- Collection challenge
- Collection complete!
- Your feedback
- Get help and support
- References
All materials are free cultural works licensed under a Creative Commons Attribution 4.0 International (CC BY 4.0) license, except where further licensing details are provided.
Restricted access data
Some resources need to restrict who is able to access their data; this is often the case for databases that curate and share sensitive data, such as patient data.
In this case, it is often possible for anyone to see the type of data available or the overview of individual studies, but researchers are required to submit an outline of why they require access to the data before they can be allowed to download it.
Examples of restricted access databases
One example of a restricted access database is the UK Biobank. It is an initiative to allow scientists from around the world access to biomedical data from half a million participants in the UK.1
It is possible for anyone to browse the type of data that is available. However, to access the data, researchers must apply for, and be granted, access. There are currently 21,000 researchers from 94 countries registered as users of UK Biobank data.2 Details of the application process are outlined on the UK Biobank website.
Another example of a restricted access databases is the European Genome-phenome Archive (EGA). You can learn more about exploring and accessing data with the EGA from this recorded webinar ‘Introduction to exploring genome-phenome data with EGA‘.
What makes data identifiable?
Learn more about types of data and what makes it identifiable in this short video from Health Data Research UK (HDR UK), the UK’s national institute for health data science.
In this short video (4:38), Alex Bailey, Programme Manager, MRC Regulatory Support Centre, discusses:
- the difference between identifiable and anonymous data
- why those working with health data need to know about these concepts
This video was produced and provided by HDR UK, to learn more about health data science access the learning platform HDR UK Futures.
As Alex mentioned in the video, sometimes access to data needs to be restricted even further and researchers can only access the data through trusted research environments. Learn more about these environments on the next page.