Other important issues
Data protection
All researchers must comply with the General Data Protection Regulation (GDPR) and the Data Protection Act 2018 (DPA 2018). The GDPR defines personal data as any data that can be attributable to a living individual and does not have to include name, address, and date of birth or gender.
The HRA website provides full guidance both for those who manage data and for members of the public and there is specific information on the HRA website for researchers. Researchers should also be aware of the HRA guidance regarding patient information and healthcare research. What constitutes a Tissue Bank and a Research Database are defined on the HRA website.
Individuals have various rights over their personal data; for example, they can access any personal data that you have about them. The participant also has a right to request that you stop processing their data. In a research context, many of these rights are limited; although it must be demonstrated that complying with such requests would impair your research, that you have appropriate security measures in place, and that published research results will not identify individuals. For further details on data management please see SOPs 38a and 38b.
Freedom of Information
Depending on which organisation holds your data - Queen Mary or Barts Health - there are different Freedom of Information (FOI) processes to follow:
- Barts Health FOI process.
- Queen Mary FOI process information is divided into staff guidance and general public information.
For more information on research databases please see the HRA website.
UK clinical research terms
Glossaries of UK research terms can be found on the following websites:
- National Institute of Health Research (NIHR) clinical trials tool-kit glossary
- National Institute for Health and Care Excellence (NICE) glossary
- INVOLVE's jargon-buster
- University of Oxford's research data glossary