Summary
Healthcare knows it needs to use data better. But trust can’t be retrofitted. A panel at Digital Health Festival 2026 brought together voices from primary care, hospital leadership, health technology, research, and the consumer perspective to explore what needs to be in place before asking patients to trust greater use of their health data. The discussion surfaced a persistent gap between what patients expect — that their information already follows them between providers — and a reality where permissions and policy frameworks haven’t kept pace with technical capability. Panellists argued that trust requires transparency, visible governance, community engagement, and a willingness to articulate what’s in it for the individual patient.
Healthcare knows it needs to use data better. A panel at Digital Health Festival 2026 explored what needs to be in place before patients can truly benefit from it.
There’s a version of the health data conversation that goes like this: the technology is ready, the clinical case is clear, and the public just needs to be brought along. It’s a framing that treats trust as a communications problem, something to be managed with better consent forms and clearer privacy policies.
A panel at this year’s Digital Health Festival suggested the real issue runs deeper. Five speakers from across clinical practice, hospital leadership, health technology, research, and the consumer perspective explored what needs to be in place before asking people to trust how their data gets used.
Why patients expect more than the system delivers
Dr Walid Jammal, a GP from Western Sydney, set out the limitations of the current situation. His patients walk into the consultation expecting that he knows what happened at their last appointment elsewhere, or on their recent visit to a hospital. Yet he doesn’t, because that information isn’t accessible.
That disconnect between what patients assume is happening with their information and what actually happens (or more often doesn’t) came up again and again. It wasn’t raised as a technology failure. The interoperability standards exist; the infrastructure to move data between providers is being built. The problem, as several panellists framed it, is that the permissions and policy frameworks haven’t kept pace with the technical capability.
Louise Ryves, who leads data and partnerships at Magentus, drew a comparison. Doing a tax return once meant gathering data from multiple sources and entering it manually. Now the ATO pre-populates returns from employers, banks, and financial institutions, because the permissions framework is in place. In health, she argued, we have the technology but not the equivalent framework. The result is a system that asks patients to trust it with increasingly sophisticated data use while still failing to move a blood test result from one clinic to the next.
It was a point Dr Jammal reinforced from the consultation room. When he talks to patients about using practice-level data for quality improvement, the most common reaction is surprise that this isn’t already happening.
What does public trust in health data actually require?
Professor Annette Braunack-Mayer, a professor specialising in public trust and health systems ethics, offered a framework for thinking about what trust demands in practice.
First, people need to know enough about what’s happening with their data. Not everything — trust inherently involves a willingness to be vulnerable. But enough to make that vulnerability a choice rather than an oversight. Second, data custodians need to be visibly committed to good governance, not just having the policies but following them in ways people can see. Third, community members need some mechanism for engagement. This isn’t about individual consent for every use on every occasion, but it does require an active choice early in the process.
Professor Braunack-Mayer observed that what really erodes social licence is people discovering that their data was being used in ways nobody told them about. The distress, she argued, comes less from the use itself than from the fact that no one said anything.
Much of the current anxiety around health data governance focuses on preventing misuse. Professor Braunack-Mayer’s research suggests the bigger risk is opacity: doing reasonable things with data but failing to explain that you’re doing them.
How health data enables personalised care — and where compliance gets in the way
Dr Katherine See, Chief Health Outcomes Officer at Northern Health, brought a service-level perspective on what it looks like when data is used well, and where institutional constraints get in the way.
Her team uses patient activation measures to assess people’s knowledge, skills, and confidence in managing their own health. That data allows a shift toward genuine personalisation, where information is good enough to treat people as individuals rather than cohorts.
But Dr See was candid about the barriers. Mandatory regulatory reporting requirements don’t always produce data that’s useful for improving outcomes. The compliance burden can crowd out the kind of active, insight-driven data use that would actually make a difference to patients. What her team is trying to do, she said, is measure what matters, and be transparent about what that reveals.
When asked what single step would most build public trust, her answer was direct: articulate clearly what’s in it for the individual. When people can see how data use helps them, not just the system or institution, that’s when engagement follows.
How AI scribes are changing the patient consent conversation
One thread in the discussion shifted the frame entirely: the consent conversation is already advancing in practice, and policy isn’t driving it.
Ryves pointed to AI scribes as an unexpected turning point. When AI scribes entered the market, they created a live conversation between clinician and patient about a piece of technology in the room. For the first time, patients were being asked, in the moment, whether they consented to an AI tool being part of their care.
Her argument was that this conversation shouldn’t stop at the scribe. The same consent dialogue could extend to data connectivity between providers, to clinical intelligence built into software, and eventually to secondary uses like research, each step taken with the patient’s informed agreement. The door, she said, is now open. And it was opened not by a government policy decision, but by a piece of technology that made consent a practical requirement.
Why health data and banking data aren’t the same
When the panel explored parallels with banking, Professor Braunack-Mayer pushed back.
Health data, she argued, sits in a fundamentally different relationship. People think of their health information as belonging to a relationship with their GP, their specialist, their care team. That relationship is grounded in confidentiality, and any framework for broader data use must honour that distinction rather than assuming banking provides a transferable model.
Dr Jammal offered a counterpoint through a patient story. He described a woman he’s treated for 15 years who has fully embraced digital access to her own health data. She reviews her results before appointments, arrives prepared, and uses the information to drive the clinical conversation. His job, he said, is to keep up and stay sharp, because if he doesn’t, that will actually erode her trust in him. It’s a picture of where the dynamic is heading for engaged patients. But the panel’s point was that trust frameworks need to work for everyone, not just the early adopters.
What the health sector should do next to build data trust
Moderator John Bradshaw, wearing his “curious consumer hat”, closed by asking each panellist for the single most important step toward building public trust in health data.
Ryves said it’s vital to lead with intent: explain what you’re doing and why, and connect it directly to better care for the individual. Dr See echoed the importance of making the value tangible to the person in front of you. Professor Braunack-Mayer said it was important to co-design with the full range of stakeholders, and that means genuinely listening, not just inviting input to validate decisions already made. Dr Jammal said [TBC — needs his actual closing answer].
Trust is built by demonstrating in specific, visible, practical ways that the system works for the person being asked to trust it. That starts with data that follows patients between providers. It extends to transparency about purpose. And it depends on a willingness to let the community shape how the conversation unfolds.
The sector talks a great deal about what health data could enable. This panel was a reminder that the enabling starts closer to the ground: with the individual patient, the individual clinician, and the question of whether the system has earned the right to ask for more.
Frequently asked questions
Why don’t patients’ health records follow them between providers?
The technology and interoperability standards to share health data between providers largely exist. The gap is in permissions and policy frameworks, which haven’t kept pace with technical capability. Unlike tax data, where the ATO has built a permissions framework that allows pre-population from multiple sources, health lacks an equivalent structure for routine data sharing between clinicians.
What builds public trust in health data use?
Research into public trust and health systems ethics points to three requirements: people need to know enough about how their data is being used to make an informed choice, data custodians need to demonstrate good governance visibly, and communities need a genuine mechanism for engagement, not just consultation that validates decisions already made.
What is the biggest risk to social licence for health data?
According to Professor Annette Braunack-Mayer, the biggest risk isn’t misuse, it’s opacity. When health organisations do reasonable things with patient data but fail to communicate that they’re doing them, the resulting loss of trust can be more damaging than the data use itself.
How are AI scribes changing patient consent in healthcare?
AI clinical scribes have introduced a real-time consent conversation into the consultation. Patients are now asked, in the moment, whether they agree to an AI tool being part of their care. This practical, technology-driven consent interaction could serve as a model for broader consent conversations around data sharing, clinical intelligence, and secondary data use such as research.
What is the single most important step to build trust in health data?
Panellists at Digital Health Festival 2026 converged on a common theme: lead with the value to the individual. Explain clearly what you’re doing with data and why, connect it to better care for the person in front of you, and co-design the approach with the communities being asked to trust it.
