How to talk about data without talking about data
- Client: Understanding Patient Data, Wellcome Trust
- My role: Client partner and project manager
- Delivered at: Comuzi, where I was Managing Director
- Team: five people, including a design research lead, a researcher and two designers
The client
Understanding Patient Data was a Wellcome Trust team working to make the use of NHS patient data more visible, understandable and trustworthy.
The brief
Information about patient data can feel abstract and disconnected from what people care about. The project explored when, during a person’s healthcare journey, it would be useful to explain how health data is used, and what those explanations could look like.
How we did it
We interviewed 10 patients and 7 healthcare professionals across the UK about the moments in a healthcare journey when people think about their data. We then ran online ideation workshops and tested prototypes with both groups.
Before the research started, I completed a data protection risk assessment for the project.
What we made
- Research with healthcare professionals and members of the public
- An ecosystem map showing how patients and professionals interact with health data
- A redesigned blood-test results letter explaining how research using health records had contributed to the result
- A waiting-room video prototype explaining how patient data is collected, used and protected
- Testing insights on when information improved understanding and when it raised questions that needed further support
What testing showed
The redesigned blood test letter helped people understand their health result. The waiting room animation raised more worries about data security than it answered, which was a useful finding for the client in its own right.
Other concepts included shielding letters, Data Stories seminars for healthcare professionals, a digital care plan for COPD and a toolkit for rare conditions.
My role
I was client partner and project manager at Comuzi. I managed stakeholders, kept up regular client check-ins, completed the data protection risk assessment, and kept the work on schedule and within budget.
The project produced two public-facing prototypes and a service map to support future work on clearer communication about patient data.
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