The Real Price of Health: Experiences of Out-of-Pocket Costs in Australia

Despite Australia having a universal health insurance scheme, out-of-pocket (OOP) costs for healthcare and medicines remain relatively high. Individual Australians are the third largest contributor to healthcare financing in Australia behind federal, state and territory governments. Much of this spending is directed at general practice care, specialist outpatient services, pharmaceuticals, diagnostic imaging, pathology and allied health services. This has the potential to create barriers to access at the front lines of the health system, where the greatest gains from prevention and early intervention can be sourced. Understanding the impact of OOP costs on the day-to-day lives of people with chronic illness, and in relation to their income level, will provide important new knowledge, and an opportunity to improve the equitable financing of health and healthcare in Australia. This study will explore the challenges people experience in managing the affordability of certain health services or medicines. It will also describe the choices that people make, which are reflective of the value they place on aspects of their health and life. This project aims to: 1) Elucidate how OOP costs of healthcare and medicines are experienced by people with chronic illnesses on low, middle, and high incomes. 2) Identify the priorities and preferences of people with chronic illnesses on low, middle and high incomes in relation to managing the OOP costs of healthcare and medicines. We conducted 57 in-depth interviews with people living with chronic conditions in all states and territories of Australia from November 2023 - August 2024. The sample included 49 participants with a chronic condition, 3 carers, and 5 people who both had a chronic condition and were also a carer. Of the participants, 26% had one chronic condition, 30% had two chronic conditions and 44% had ⪖3 chronic conditions. Conditions included: arthritis and musculoskeletal disorders (32%), mental illness (32%) chronic pain (18%), diabetes (12%), cardiovascular disease (12%), cancer (9%) asthma (9%), neurological conditions (5%), other (44%). Age range 24 - 77 years, mean 52 years. The interview questions focused on: health conditions, experiences of paying for care from health providers, medications, diagnostic tests, equipment and health aids. The impact of out-of-pocket costs on daily life and strategies used to manage out-of-pocket costs.
Type
collection
Title
The Real Price of Health: Experiences of Out-of-Pocket Costs in Australia
Brief Title
Experiences of Out-of-Pocket Costs of Health in Australia
Alternate Title
Qualitative
Collection Type
Repository
Access Privileges
Medicine & Health Sciences
DOI - Digital Object Identifier
10.25911/n9nz-n463
Metadata Language
English
Data Language
English
Brief Description
These interview data were collected in 2023 - 2024 to facilitate examination of people living with chronic conditions' experiences of the out-of-pocket costs of health care and medicines in Australia.
Full Description
Despite Australia having a universal health insurance scheme, out-of-pocket (OOP) costs for healthcare and medicines remain relatively high. Individual Australians are the third largest contributor to healthcare financing in Australia behind federal, state and territory governments. Much of this spending is directed at general practice care, specialist outpatient services, pharmaceuticals, diagnostic imaging, pathology and allied health services. This has the potential to create barriers to access at the front lines of the health system, where the greatest gains from prevention and early intervention can be sourced. Understanding the impact of OOP costs on the day-to-day lives of people with chronic illness, and in relation to their income level, will provide important new knowledge, and an opportunity to improve the equitable financing of health and healthcare in Australia. This study will explore the challenges people experience in managing the affordability of certain health services or medicines. It will also describe the choices that people make, which are reflective of the value they place on aspects of their health and life. This project aims to: 1) Elucidate how OOP costs of healthcare and medicines are experienced by people with chronic illnesses on low, middle, and high incomes. 2) Identify the priorities and preferences of people with chronic illnesses on low, middle and high incomes in relation to managing the OOP costs of healthcare and medicines. We conducted 57 in-depth interviews with people living with chronic conditions in all states and territories of Australia from November 2023 - August 2024. The sample included 49 participants with a chronic condition, 3 carers, and 5 people who both had a chronic condition and were also a carer. Of the participants, 26% had one chronic condition, 30% had two chronic conditions and 44% had ⪖3 chronic conditions. Conditions included: arthritis and musculoskeletal disorders (32%), mental illness (32%) chronic pain (18%), diabetes (12%), cardiovascular disease (12%), cancer (9%) asthma (9%), neurological conditions (5%), other (44%). Age range 24 - 77 years, mean 52 years. The interview questions focused on: health conditions, experiences of paying for care from health providers, medications, diagnostic tests, equipment and health aids. The impact of out-of-pocket costs on daily life and strategies used to manage out-of-pocket costs.
Contact Email
jane.desborough@anu.edu.au
Contact Address
National Centre For Epidemiology and Population Health, 63 Eggleston Road, Australian National University
Contact Phone Number
0407897066
Principal Investigator
Jane Desborough
Supervisors
Jane Desborough
Fields of Research
420311 - Health systems; 420319 - Primary health care; 440706 - Health policy
Socio-Economic Objective
200205 - Health policy evaluation; 200207 - Social structure and health; 200401 - Behaviour and health
Keywords
Out-of-pocket costs, health expenses, chronic conditions, health financing, equity,
Type of Research Activity
Applied Research
Date Coverage
11/2023
8/2024
Geospatial Location
Australia
Date of data creation
2024
Year of data publication
2026
Creator(s) for Citation
Jane
Desborough
Elisabeth
Huynh
Anne
Parkinson
Kamania
Butler
Danielle
Butler
Jillian
Kingsford Smith
Fiona
Hodson
Samar
Ibrahim
Julie
Veitch
Leanne
Watts
Hse
Di Law
Shelley
Wang
Cam
Donaldson
Rosemary
Korda
Publisher for Citation
National Centre For Epidemiology and Population Health, 63 Eggleston Road, Australian National University
Publications
doi
10.1016/j.healthpol.2025.105359
Lived experience of out-of-pocket costs of health care and medicines by people with chronic conditions and their families in Australia: a systematic review of the qualitative literature
Health Policy, 2025, 158:105359
doi
10.1136/bmjopen-2022-065932
Real price of health-experiences of out-of-pocket costs in Australia: protocol for a systematic review
BMJ Open 2022;12:e065932
Related Websites
https://nceph.anu.edu.au/research/research-projects/real-price-health-experiences-out-pocket-costs-australia
The Real Price of Health: Experiences of Out-of-Pocket Costs in Australia
Access Rights
Contact Chief Investigator to negotiate access to the data
Access Rights Type
Conditional
Rights held in and over the data
CC BY-NC-ND
Licence Type
CC-BY-NC-ND - Attribution-NonCommercial-NoDervis (Version 4.0)
Data Location
The data is currently in a password protected folder on the ANU One Drive. I am checking that it is completely de-identified. I will upload it once the collection is approved.
Retention Period
Indefinitely
Extent or Quantity
55
Data Size
8.18 MB
Data Management Plan
Yes
Related external people and organisations
abn
26 264 230 404
Chronic Pain Australia
hasAssociationWith
Related external grants and projects
arc
#DE220100663
The Real Price of Health: Experiences of Out-of-Pocket Costs in Australia
isOutputOf

Download data files

Number of files: 55

Size: 8.18 MB

Identifier: anudc:6519

Status: Published
Published to:
  • Australian National University
  • Australian National Data Service
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