Case Study: University of Edinburgh  ̶  What is Data?

Background

In February 2024, the University of Edinburgh launched the “What is Data?” project, funded by the College of Medicine and Veterinary Medicine. This initiative aimed to create a tool to help families and young patients better understand how data is collected and used in research within the Paediatric Critical Care Unit. By working closely with research clinicians, families, and the Edinburgh Children’s Hospital Charity Youth Forum, the project sought to address misconceptions about data and highlight its essential role in advancing medical research and improving patient care.

Digital Bricks created a short animated video designed to provide clear and accessible information. We wanted to promote greater understanding of the research process and make it available to everyone by sharing it on YouTube and the University’s own video sharing site, Mediahopper.

Challenge

Data collection poses significant communication challenges for families and young patients. How data is collected and its role in research can be complex, leading to concern and uncertainty. While security and anonymisation are critical throughout the research process, there can be limited understanding of the rigorous measures taken by research teams to ensure these protections. The resource needed to address this in a way that was clear and reassuring, while remaining relatable and empathetic. To do this we considered balancing input from diverse perspectives including young people, families, and clinicians. The University’s branding would reassure the audience and we would work with their guielines to create something visually engaging.

Solution

Collaboration and co-creation were central to the success of the project. From the outset, young people and families were actively involved in shaping the resource, alongside research clinicians and the project team. Initial consultations provided valuable insights into their questions and concerns, ensuring the focus was relevant and empathetic to their lived experience.

The young people contributed to the creative process, offering input on the script and visual concepts to ensure the animation resonated with its intended audience. They also generously gave their voices for the final voiceover, adding a personal and authentic touch. 

We worked iteratively, incorporating feedback at each stage to refine the script, visuals, and overall tone. The final animation balanced vibrant visuals with clear, accessible messaging, effectively demystifying the complexities of data collection and its role in research.

Outcome

The Understanding Healthcare Data and Research for Young People video is now available as an educational resource, providing families and young patients with a clearer understanding of how data is collected and used in research. Co-creation not only addressed the concerns of families but also empowered young people to play an active role in creating the resource, giving them a sense of ownership and trust.

Through transparency and collaboration, the project strengthened relationships between clinicians, families, and young patients. The video serves as a model for future initiatives that aim to simplify complex concepts and encourage meaningful public engagement with healthcare and research. The video will contribute to ongoing efforts to improve communication in medical and academic settings.

Watch the full video above

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