At the second EHDS Unpacked webinar, Dr Danielle Armour, Senior Lecturer at the University of Queensland, and Dr Ilan Mears, Program Manager at the Australian Research Data Commons, highlighted that building trusted health data systems relies not just on infrastructure, but on relationships. Below they share their reflections on how governance, community engagement, and trust are all equally critical.
Reframing the role of people in data
A starting point for us has been to challenge how we think about the people behind the data. Too often, individuals are treated as passive “data subjects.” In our work, we’ve deliberately shifted this framing. We see people – particularly Aboriginal and Torres Strait Islander communities – as data stakeholders, with ongoing rights and interests in how their data is used.
This reflects the reality that data is deeply connected to identity, culture, and lived experience. When data systems ignore this, they risk reinforcing harm, particularly for communities who have historically been misrepresented through deficit-based narratives.
Designing governance that embeds community authority
Through the Social Science Research Infrastructure Network (SSRIN) project, we developed a dual governance model that ensures decision-making is shared. On one side, an Indigenous Steering Committee brings cultural authority, technical expertise, and strategic oversight. On the other, a Community Reference Group ensures that the work remains grounded in lived experience, accessibility, and community expectations. This model creates a continuous feedback loop – between expertise and experience, between systems and people.
Recognising that trust is built through process
We’ve learned that trust cannot be delivered through policy alone but is built incrementally.
That means taking the time to co-design, taking care in navigating complex ethics approvals, coordinating across remote and metropolitan communities, and recognising that communities are not homogenous. It also means resourcing this work properly. Genuine participation requires flexibility, investment, and commitment – without that, engagement risks becoming tokenistic.
Bridging cultural governance and technical infrastructure
Alongside this, we’re working to harmonise health data at a national scale. Through the People Research Data Commons, we are adopting global standards like the Observational Medical Outcomes Partnership Common Data Model (OMOP CDM) to support secure, federated analysis of health data.
But this is where the tension becomes clear. Global standards enable interoperability, yet they don’t always reflect local cultural realities.
For example, there is currently no community consensus on how to represent Indigenous identity within some of these data models. Addressing this requires data standard communities to work together with Aboriginal and Torres Islander leadership to determine and implement community-endorsed approaches, rather than a purely technical approach.
Our role has therefore been to support that leadership, ensuring that governance principles – like care, collective benefit, authority, and responsibility – are not just articulated, but operationalised in practice.
What this means beyond Australia
While our work is grounded in the Australian context, the lessons are transferable. We would highlight a few principles that we believe are critical for initiatives like the European Health Data Space:
- Data is cultural, not just technical
- Governance must be layered – combining expertise and community authority
- Trust is built through actions and processes, not just policy frameworks
- Co-design improves both ethics and data quality
Ultimately, overcoming cultural barriers requires ongoing commitment to participation, accountability, and relationship-building. If we want health data systems to succeed – nationally or globally – we need to move beyond seeing data as a resource. We need to recognise it as something that connects people, communities, and trust.
Find out more about Understanding Patient Data's engagement with the European Health Data Space, and catch up on EHDS Unpacked Part Two: Global lessons for building a trusted health data space.