Research overview

The overarching aim of the study is to develop a lived experience-led model of care for people affected by long COVID. Existing research highlights significant issues concerning peoples' lived experience of healthcare and the need for integrative models that include both medical and allied health approaches to ongoing management. This aim is encompassed by the following four research deliverables that are the backbone of the project.

1. Develop a meaningful understanding of long COVID and its impacts for Australia’s diverse population
2. Produce a toolkit consisting of validated and reliable measures for assessment monitoring the impact and costing the delivery of long COVID care in Australia
3. Inform a transdisciplinary, lived experience-led model of long COVID care
4. Support a coordinated approach to Australian long COVID research

We will work closely with people from different communities and backgrounds to design a research approach that’s right for them. This includes:

• Setting research questions that are relevant and important to each community
• Working with interpreters to capture experiences in local languages
• Supporting Indigenous storytelling, such as yarning and artistic expression
• Support Indigenous researchers, research students, or local health workers in conducting research activities alongside us or in our place
• Adjusting our research activities to be accessible to people with long COVID or other health conditions who experience fatigue
• Enabling communities to decide how they want their long COVID stories to be captured and how they want the findings to be shared
• Supporting communities and local health providers with 'knowledge translation'. This means discussing how the research findings can impact a community, organisational, state, or federal level. Who should be told about the findings? What policies or practices should change as a result?

Our research follows an Experience-Based Co-Design (EBCD) methodology. EBCD is a collaborative approach to improving healthcare practice and services by actively involving people with lived experience, families/supporters, and health practitioners in the design process. The approach draws on people’s lived experiences to identify priorities for change and develop solutions together, ensuring care models are grounded in real-world needs and perspectives. The overall research design is split into three key project arms or phases of activity, which are outlined in greater detail below: