A co-designed digital tool to generate missing longitudinal data on childhood ear and hearing healthcare trajectories: The Pathways App     — The Association Specialists
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  2. Oral Presentations - Innovations in health data collection and measurement for equity and action
  3. A co-designed digital tool to generate missing longitudinal data on childhood ear and hearing healthcare trajectories: The Pathways App    

A co-designed digital tool to generate missing longitudinal data on childhood ear and hearing healthcare trajectories: The Pathways App     (23873)

Jacqueline Stephens 1 , Samantha Rattos 1 , Celine Northcott 1 , Emma Burnett 2 , Skye Akbar 3 , Trish Williams 4 , Patrick Sharpe 1 5
  1. Flinders Health and Medical Research Institute, Flinders University, Adelaide, SA, Australia
  2. Far West Community Partnerships, Ceduna, SA, Australia
  3. College of Business and Law, Adelaide University, Adelaide, SA, Australia
  4. College of Science and Engineering, Flinders University, Adelaide, SA, Australia
  5. EMU Consulting, Ceduna, SA, Australia

Background: Aboriginal and Torres Strait Islander children experience disproportionately high rates of ear disease and associated hearing loss, compounded by delayed diagnosis, fragmented referral pathways, and inconsistent follow-up. A critical systems gap is the absence of longitudinal data linking clinical encounters across services. This results in limited visibility of pre-referral trajectories and the “hidden waiting list” experienced by families.

Methods: The Pathways App is a co-designed, culturally responsive digital health tracking application developed in partnership with Aboriginal families and communities. The app functions as a patient-held data system which captures otherwise unavailable longitudinal data on care pathways, including symptom tracking, medication logging, appointment scheduling, and service access across multiple sites. The app enables real-time documentation of pre-referral and inter-service experiences which are often not captured in routine administrative or clinical datasets. A six-month pilot study is evaluating app usability, acceptability, and data utility. Data sources include app usage analytics, post-intervention surveys, and optional qualitative interviews with health consumers, led by an Aboriginal researcher.

Results: The app is an example of how to generate otherwise unavailable novel datasets to understand pre-referral ear health trajectories and inter-service patterns of engagement. These data will provide previously unavailable insight into care delays, system navigation patterns, and gaps in continuity between services. User feedback will assess acceptability, cultural safety, and perceived value of the app as both a care and data tool.

Conclusion: The Pathways App is an innovative, community co-designed digital tool which enables Aboriginal and Torres Strait Islander families to self-manage their children’s ear and hearing healthcare. Furthermore, by generating patient-held, real-time longitudinal data on the otherwise unrecorded “hidden waiting list” and referral pathway, the app addresses a critical data gap which will strengthen culturally safe, equitable health service delivery for Aboriginal and Torres Strait Islander children.