New animation clears up GDPR for research participants

25 Mar, 2024

The MRC Clinical Trials Unit at UCL, Penta and the Health Research Authority have produced a new animated video to help children and young people understand GDPR when they are being asked to take part in a clinical trial. The video is designed to be shown to participants before they sign a GDPR form, allowing them to give informed consent to take part in medical research.

GDPR, which stands for General Data Protection Regulation, is a set of rules to ensure personal data is protected. Before taking part in a research study, participants must consent to their personal data being collected and used. However, GDPR can be difficult to understand, especially for children. Consent forms also commonly include complex terms and jargon, which are usually unfamiliar to research participants.

Using an analogy of toy bricks as personal data, the six-minute animation explains how GDPR aims to keep personal data safe, as well as the rights of research participants. The video also defines important terms such as “sponsor”, “data processor” and “third parties”, helping participants understand who they are giving consent to and how these parties will use their data.

Young people from the CHIVA Youth Committee and Penta Youth Trials Boards in Uganda, Zimbabwe, South Africa and the UK helped create the story and script, ensuring the content was appropriate for the intended audience.

Research staff can now use this video to inform study participants of any age, taking part in a range of future studies across different disease areas.

The video was produced by Biggerhouse Films CIC with funding from the Medical Research Council. Watch the video here.