Empowering Consumers: The Missing Link in Digital Health Co-Design
The digital transformation of healthcare is revolutionizing the way we manage our health, but it also raises important questions about consumer involvement. As digital health tools, devices, and platforms become more prevalent, it's crucial to consider whether consumers' lived experiences alone are sufficient for meaningful contributions to the design process. Or do they need technical expertise to feel confident in discussions and truly influence the development of digital health technologies?
Public health researchers have been applying co-design principles for over a decade, but consumers often find themselves at the end of the process, testing usability or providing feedback on portals. This is a missed opportunity, as their input can significantly impact the final product. When a consumer partner raised this issue, it sparked our curiosity and led us to investigate further.
Our content analysis of resources for health advocates and consumer representatives revealed a surprising gap. While there's an abundance of educational material on using digital health tools, and a solid foundation of work on tech co-design in public health, there's a noticeable lack of support for consumer representatives in co-designing, evaluating, or implementing digital health solutions.
The Missing Link: A Technical Knowledge Gap
Our analysis of 21 Australian and international sites uncovered a scarcity of accessible materials on the technical aspects of digital health. This includes crucial topics like data security, AI governance, and interoperability standards, which are essential for the development, evaluation, and implementation of digital health tools. Australia has strong consumer and community involvement (CCI) foundations, with resources like the Guiding Principles and Language Guide from Sydney Health Partners. However, these resources are not tailored to digital health and may not adequately empower consumers to co-design, evaluate, or implement digital health solutions.
When digital health-specific resources do exist, they often appear fragmented. For instance, the Consumers Health Forum provides consumer-friendly explanations of digital health interoperability, while the Health Consumers' Council WA has published detailed series on interoperability and patient portals. However, these resources are scattered and may not provide a comprehensive understanding of the technical aspects of digital health.
Why It Matters Now: Shaping Healthcare Decisions
The decisions made upstream, such as data exchange methods, security models, and AI integration, have a profound impact on downstream healthcare. These choices determine whether clinicians have access to complete patient histories through interoperable data exchange, whether sensitive information is protected by robust security frameworks, and whether AI-driven decision support provides accurate and equitable recommendations.
The Australasian Institute of Digital Health & Oracle Health's Thought Leadership Roundtable report emphasizes the need for early consumer involvement in design projects and investment in workforce digital capability building. This includes a shared code of conduct on AI, ensuring healthcare professionals have agreed-upon clinical competencies and practice guidelines for patient safety, best practice service quality, and practitioner credentialling. Additionally, governance should prioritize trust, transparency, and equity, with robust risk assessment frameworks and consumer feedback loops for continuous learning and improvement.
This approach aligns with the NHMRC 2025 Consultation Report, which supports embedding consumer involvement across all research stages. The NHMRC also highlights the importance of digital health literacy, noting that even basic enablers like virtual meetings can impact participation depending on consumers' internet access and digital literacy. This literacy gap is a concern, especially as the sector expects increased collaboration and leadership from consumers in research.
Closing the Literacy Gap: A Collaborative Approach
To empower consumers to contribute meaningfully from the outset, they need support in building their digital health literacy. This presents a practical opportunity for researchers and consumers to collaborate. Researchers can partner with consumer advocacy organizations to co-develop or deliver digital health training, exchanging expertise to build capability and foster sustainable, mutually beneficial collaborations. Existing clinician-focused resources can also be adapted for consumers at a relatively low cost.
A practical next step could be to create a shared "Digital Health 101 for Design and Delivery" curriculum. This curriculum could include four to six short micro-modules on product lifecycles, basic data concepts like APIs and FHIR, and essential topics such as safety, privacy, and cybersecurity. Additionally, consumer-ready technical briefs co-authored by consumer leaders and technical experts can provide clear, accessible explanations of the concepts shaping digital health.
Looking Ahead: AI-Driven Learning
As AI-driven natural language tools become more prevalent, they may support consumer learning. Our research has shown that models like ChatGPT can generate accurate responses to clinical questions, but they must be used with a clear understanding of patient capacities and careful oversight. As co-design becomes central to digital health innovation, further research is needed to evaluate the most effective approaches for building consumers' digital health literacy and supporting their involvement in development, evaluation, and implementation of digital health tools.
About the Author
Edel O'Hagan, PhD, is a Research Fellow at the Westmead Applied Research Centre, University of Sydney. Her research focuses on digital health for chronic conditions and improving consumer involvement in research.
Declaration of Interests: Edel is a co-author of the open-access paper on consumer upskilling in digital health.
