The Future of Digital Health: Empowering Consumers as Co-Designers
The digital transformation of healthcare is revolutionizing the way we manage our health, but it also raises important questions about the role of consumers in shaping the tools, devices, and platforms that will define our digital health future. As healthcare becomes increasingly digital, is it enough for consumers to have lived experience, or do they need technical expertise to contribute effectively to the design of digital health technologies? This is a critical issue that demands our attention, especially as we strive to create inclusive and effective digital health solutions.
The Co-Design Dilemma
Public health researchers have been applying co-design principles for over a decade, but too often, consumers are only invited to contribute at the end of the technology design process. They might be asked to test an application's usability or provide feedback on a portal, but their input is rarely sought early on, when it can have the greatest impact. This is a significant concern that our research team encountered when a consumer partner raised it with us.
The Gap in Resources
Our content analysis of freely available resources for upskilling health advocates and consumer representatives revealed a striking gap. While there is ample educational material to help people use digital health tools, and a solid body of work on tech co-design in public health, there is very little support for consumer representatives in the process of co-designing, evaluating, or implementing digital health solutions. This lack of resources is a significant barrier to meaningful consumer involvement.
The Technical Information Gap
Our analysis of 21 Australian and international sites showed that when consumers search for information on the technical side of digital health, such as data security, AI governance, and interoperability standards, relevant and accessible materials are scarce. This is a critical issue, as the technical decisions made upstream can shape the care consumers receive downstream.
The Importance of Early Consumer Involvement
Decisions made upstream, such as data exchange methods, security models, and AI integration, can significantly impact the care consumers receive. For example, interoperable data exchange can ensure clinicians have access to complete and usable patient histories, robust security frameworks can protect sensitive health information, and AI-driven decision support can provide accurate and equitable recommendations. This is why early consumer involvement in design projects and investment in workforce digital capability building are essential.
Closing the Literacy Gap
To give consumers a genuine chance to contribute to health projects from the outset, they must be supported to build their digital health literacy. This presents a practical opportunity for researchers and consumers to work together. Researchers could partner with consumer advocacy organizations to co-develop or deliver digital health training, fostering more sustainable and mutually beneficial collaborations. Existing clinician-focused resources could also be adapted for consumer audiences at a relatively low cost.
A Shared Curriculum for Digital Health 101
A practical next step could be to develop a shared "Digital Health 101 for Design and Delivery" curriculum. This curriculum would include four to six short micro-modules introducing product lifecycles, basic data concepts like application programming interfaces (APIs) and Fast Healthcare Interoperability Resources (FHIR), as well as essential topics like safety, privacy, and cybersecurity. Consumer-ready technical briefs co-authored by consumer leaders and technical experts could also be developed to provide clear and accessible explanations of the concepts that shape digital health.
The Role of AI in Consumer Learning
Looking ahead, AI-driven natural language tools may help support consumer learning. Our work 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 to building consumers' digital health literacy and supporting their involvement in development, evaluation, and implementation.
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 meaningful consumer involvement in research. Her work highlights the importance of closing the literacy gap to empower consumers as co-designers of Australia's digital health future.
