In October 2025, NGNY co-founder John Saulo was invited by Lockie Cooke, founder of iYarn, to join a panel at SXSW Sydney exploring how culture, technology, and community-led design can drive innovation in Indigenous health. The session brought together Dr Kisani Upward (Gamilaroi Nurse & PhD Researcher, Manna Institute), Benson Saulo (Advisor & former Australian Consul-General to the U.S.), and Annette Schmiede (CEO, Digital Health CRC), in conversation about what it means to design digital health systems that truly serve First Nations peoples.
The session was recorded, and this article draws from that discussion — sharing the key themes, reflections, and practical insights that emerged from the hour-long conversation.
Culture and Connection at the Centre
The discussion opened with a reminder that culture itself holds the blueprint for wellbeing.
Lockie Cooke shared the cultural roots of iYarn, inspired by the Kimberley concept of liyan — meaning spirit, emotion, mind, and body — which became the foundation for iYarn’s digital check-in tool.
“It’s disrespectful if I don’t connect properly,” Lockie explained. “So I wanted to create a digital tool that encourages that connection again.”
By combining cultural protocols of checking in with modern digital infrastructure, iYarn enables individuals and organisations to monitor wellbeing, reflect, and engage in two-way communication — a process that both honours cultural practice and supports clinical data collection.
The platform’s evolution demonstrates that innovation doesn’t need to replace culture; it can extend it.
Bridging the Digital Divide
Dr Kisani Upward’s story brought the reality of rural and remote connectivity to the forefront.
As a researcher and nurse from Tamworth, she’s witnessed first-hand how the lack of digital access continues to impact health outcomes and emergency response.
“Families spoke about being unable to access bushfire warnings or smoke messages because they simply didn’t have internet or reliable mobile service,” she said. “Connectivity itself — the ability to reach each other and stay safe — is vital health infrastructure.”
Beyond infrastructure, digital literacy and affordability compound the challenge. Many families must choose between data for their phones or other household essentials. As Dr Upward pointed out, “That lack of access deepens the digital divide and creates vulnerability to misinformation. It’s not just about access; it’s about empowerment.”
Her message was clear — before innovation can transform health, it must address the foundations of connectivity, literacy, and equitable access.
Trust and the Co-Design Imperative
Moderator John Saulo steered the conversation toward the question of how we design systems with community.
For Annette Schmiede, co-design isn’t a buzzword — it’s a structural requirement. As CEO of the Digital Health CRC, she spoke about the need for culturally responsive research embedded within health organisations themselves.
“Despite the advances in digital tools,” she said, “these technologies haven’t meaningfully improved outcomes. Why? Because there’s no trust, poor usability, and exclusion. This project is set to change that.”
Benson Saulo built on this, challenging the top-down nature of many initiatives.
“One of the biggest problems is predetermined outcomes,” he said. “Solutions get built around assumptions, not around people. The knowledge already exists within community — what’s lacking is the resources, the tools, and the capital to activate it.”
The group agreed that genuine co-design means relinquishing control, creating space for local expertise, and ensuring projects endure beyond individuals or grant cycles.
“Be mindful of the history,” Lockie Cooke added. “Too often, when one person leaves, the whole relationship collapses. Build with patience, and make sure your intent outlasts any one person.”
Data Sovereignty: Control and Consent
As digital tools become more prevalent in healthcare, the issue of data sovereignty is becoming central to ethical design.
Dr Upward spoke of her research work where Aboriginal participants were treated not as subjects, but as co-researchers and owners of their data.
“We used art-based research methods. Each participant owned their images and lent them to the State Library under individual contracts. It was about reciprocity — protecting ownership while creating shared knowledge.”
This ethos is mirrored in iYarn’s new Dynamic Data Consent model, which gives individuals control over who accesses their information.
“It’s bizarre that people still don’t have rights to their own health data once it’s collected,” Lockie Cooke said. “Dynamic consent means people decide, in real time, who can use their data and for what purpose. That’s how you build trust.”
For NGNY and partners like the Digital Health CRC, these approaches are setting a precedent — showing that Indigenous data governance isn’t an optional feature; it’s an ethical foundation.
Investment, Scale and the Path Forward
When the conversation turned to the question of investment, Benson Saulo brought a global lens. Having worked across North America as Australia’s Consul-General, he compared how Native American tribes have built sovereign wealth through self-governance, enabling them to fund their own health and education systems.
“There’s no shortage of capital — but there is a shortage of practical action,” he said. “Indigenous businesses still sit high on perceived risk profiles. The goodwill exists, but the investment hasn’t followed.”
In his view, Australia’s Indigenous business sector is still in its early stages of maturity, but the opportunities are vast — particularly when Indigenous enterprises, like iYarn and NGNY, are demonstrating scalable models that pair cultural integrity with commercial viability.
“We’re finally in a period where Indigenous businesses are creating new systems,” he added. “But to grow, we need capital that’s willing to learn, listen, and stay the course.”
What We Learned
The hour-long session left the audience with clear takeaways — not just about health, but about the broader process of Indigenous innovation:
- Design from the ground up.
Start with what communities know. Co-design isn’t consultation — it’s co-creation. - Invest in connectivity as care.
Access to digital networks is essential health infrastructure. - Build trust through transparency.
Adopt Indigenous data sovereignty principles like dynamic consent. - Embed continuity.
Move beyond individual relationships — create institutional partnerships that last. - Shift from pilot to scale.
Support Indigenous-led projects with long-term investment, not short-term trials. - Lean into discomfort.
“You’ll make mistakes,” as Benson Saulo reminded the audience, “but that’s part of progress.”
Closing Reflection
This SXSW discussion reflected what’s changing across Australia’s health and technology sectors — a growing recognition that innovation doesn’t begin in the lab; it begins with listening.
By grounding design in cultural practice and community leadership, projects like iYarn and partnerships like this one between Digital Health CRC, NGNY, and First Nations researchers show what’s possible when technology serves culture — not the other way around.
The future of digital health will not only be measured by efficiency or data, but by connection — the kind that honours both tradition and innovation, and the people whose wellbeing depends on it.
