Health data has the potential to transform care, but only if we build systems people trust. That means involving the public in decisions, designing with care, and being honest about trade-offs.
Recently, Peter Glick from the NortHFutures team at Open Lab hosted a panel that asked some difficult but essential questions about the future of health data and public trust.
‘Unlocking Sensitive Data for Research: Breaking Barriers, Seizing Opportunities, Rethinking Consent’ brought together voices from healthcare, policy, tech, and lived experience to explore what it really means to use sensitive data responsibly, focusing on how data is handled in secure environments.
The panel took place at the European Conference for Computer Supported Cooperative Work (ECSCW2025), hosted this year at Newcastle University, and focuses on designing collaborative systems grounded in real-world practice. It was the ideal forum to explore how ethics and trust can be embedded in healthtech from the start.
Through the discussion, our panel considered:
- Is security in health data real, or just theatre?
- Can true anonymity exist with such rich, multi-dimensional and linked data sets, working at this scale?
- Who should have a say in how personal health data is used - and how do we make that meaningful, not just symbolic?
- How does public perception shape understandings of data security and risk?
- To what extent does the commercial sector think about the emotional impact of people interacting with health and care data, even when it’s anonymised?
- Who benefits from the data, handled responsibly?
Thank you to our brilliant panellists for bringing their insights and perspectives:
- Arne Wolters – Head of Improvement Analytics at Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust and Implementation Lead at NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC)
- James Prentis – Consultant Anaesthetist and Researcher at The Newcastle Upon Tyne Hospitals NHS Foundation Trust
- Ashmita Randhawa, DPhil – Digital Policy and Innovation Specialist at Sunderland Software City and Honorary Professor at National Innovation Centre for Data
- Rob Moriarty – Patient Advocate and Director at Chrobis Ltd
Thank you to Peter Glick for expertly chairing the panel, and to EUSSET - European Society for Socially Embedded Technologies for hosting us.
The panel was shaped in collaboration with our panellists, and supported by Abigail Durrant and the Secure Data Environment Programme for the North East and North Cumbria team.