Development, Co‐Design and Pilot Testing of Resources to Support Informed Decision‐Making for Lung Cancer Screening in Australia: A Study Engaging Diverse Communities and Expert Healthcare Professionals
Rachael H. Dodd, Kathleen McFadden, Marianne Weber, Dana Mouwad, Mei Ling Yap, Michelle Dickson, Simone Sheriff, Emily Stone, Dipti Zachariah, Alicia King, Nicole M. RankinABSTRACT
Introduction
Australia's National Lung Cancer Screening (LCS) Program commenced in July 2025, targeting people at high risk of lung cancer based on age and smoking history. This study aimed to co‐design evidence‐based decision support tools to facilitate shared decision‐making (SDM) for LCS in collaboration with intended end‐users.
Methods
Co‐design workshops were conducted with consumers, including Aboriginal and Torres Strait Islander peoples (4 workshops; n = 54), and clinicians/experts (2 workshops; n = 7). Participants were recruited through an independent social research company, an ongoing wellbeing support group, an Aboriginal Community Controlled Health Service and purposive sampling. Sessions involved structured activities to identify key content priorities and preferred formats for decision support tools. Workshop data were analysed concerning preferences regarding the key priorities for content and design of the tools. Cognitive interviews ( n = 15) with an independent group of consumers were undertaken to test comprehensibility and refine design elements. Interviews were analysed against the key content areas that needed to be improved and the views of participants across the three tools developed. For each participant, their likes, dislikes, suggested changes, and how they compared across the three resources were documented. All resources were developed iteratively in alignment with International Patient Decision Aid Standards.
Results
Key shared priorities across consumers and clinicians included information about the screening process, what happens after the scan, benefits of screening, the need to manage cancer and smoking‐related stigma and discrimination, tailoring for different language groups, and cultural safety. Consumers emphasised the need for visual representations of the screening pathway and testimonials from previous participants, while finding icon arrays confusing and overly statistical. Both groups highlighted the importance of supporting engagement with screening and reframing potential harms as ‘other considerations’ rather than deterrents. Feedback from cognitive interviews informed refinements to improve clarity and usability. The final suite of resources comprised a 16‐page A5 booklet, a 2‐page A4 leaflet, and a 3‐min animated video.
Conclusion
This co‐design process produced three decision support tools to support informed choice within Australia's National LCS Program. The tools were found to be clear, acceptable, and adaptable, with potential for broader use in international LCS implementation.
Patient or Public contribution
An Aboriginal Reference Group of seven members was formed at project inception and provided cultural oversight and support in the design and conduct of the research with Aboriginal and Torres Strait Islander peoples. Members of the public who might be eligible or may have a family member eligible for lung cancer screening, were included in the conduct of the research.