Care My Way - Co-Designing a Patient-Held Resource to Improve Information Sharing Between Primary and Specialist Care for People With Cancer

Sep 29, 2026

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Cancer creates long-term, complex care needs that depend on well-coordinated delivery across primary and specialist settings. Continuity is frequently weakened when providers lack shared information about a person’s circumstances, communication support needs, health knowledge, or cultural requirements. This project used co-design with people from culturally and linguistically diverse backgrounds with lived cancer experience and their care providers to create a patient-held resource improving continuity when accessing multiple services.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages8

Reading Time20 min

AccessFree to download

Abstract

Background

Methods

Results

Conclusions

Introduction

Health Expectations ORIGINAL ARTICLE Care My Way: Co‐Designing a Patient‐Held Resource to Improve Information Sharing Between Primary and Specialist Care for People With Cancer Reema Harrison1 | Bronwyn Newman1 | Ashfaq Chauhan1 | Kellie Holland2 | Clarel Philibert1 | Juliana Emerick1 | Kirsten Oataway3 | Elizabeth Manias4 | Carlene Wilson5 1Australian Institute of Health Innovation, Macquarie University, Sydney, New South Wales, Australia | 2Counterpart, Women's Health Victoria, Melbourne, Victoria, Australia | 3ONJ Centre, Austin Health, Melbourne, Victoria, Australia | 4Monash Nursing and Midwifery, Monash University, Melbourne, Victoria, Australia | 5Centre for Epidemiology and Biostatistics, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, Victoria, Australia Correspondence: Reema Harrison ([reema.harrison@mq.edu.au](reema.harrison@mq.edu.au)) Received: 31 July 2025 | Revised: 31 July 2025 | Accepted: 21 August 2025 Funding: This study was supported by a National Health and Medical Research Council Ideas Project grant (1189025) in addition to a Cancer Australia Supporting People with Cancer grant (CA‐ITA‐1819/01) . Keywords: cancer | co‐design | communication | consumer engagement | cultural diversity | patient involvement | primary care ABSTRACT Background: For many individuals, living with cancer means having a chronic and complex health condition that requires well‐coordinated care between primary and specialist settings. Continuity of care is often compromised by lack of shared information between providers about a person's circumstances, communication support needs, health information or cultural requirements. This project aimed to use co‐design with people from culturally and linguistically diverse backgrounds who have lived experience of cancer and their care providers to create a resource to enhance continuity of care when accessing multiple health providers. Methods: A co‐design group (n = 9) was formed comprising of people from different cultural and linguistic backgrounds with lived experience of cancer (n = 4) as survivors or carers, alongside healthcare providers (n = 5) working in primary care or as specialists. Co‐design group members were recruited from cancer support organisations, consumer organisations, primary health networks, hospital oncology services and professional networks nationally in Australia to provide diverse lived experience of cancer and professional expertise in the provision of cancer care. A series of four co‐design workshops were held, supported by asynchronous communication facilitated by an external agency to create and refine the final prototype resource. Results: The co‐design group created a person‐held tool called Care My Way for individuals with cancer to share socio‐cultural information with health providers. This resource was developed in response to an identified gap in person‐held resources that for people with cancer to communicate their socio‐cultural information beyond interpreter requirements, language spoken and country of birth so that health providers can understand how this may influence care. Care My Way comprises of four components through which people living with cancer can share information about (1) themselves,(2) their communication approach and support needs,(3) their cancer journey and care, and (4) their care requirements based on cultural and faith backgrounds. Using Care My Way seeks to promote relational and informational continuity of care between multiple health professionals for people with cancer whose care spans primary and specialist settings. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. © 2025 The Author(s) . Health Expectations published by John Wiley & Sons Ltd. Health Expectations, 2025; 28:e70498 1 of 8 [https://d

FAQs

What problem does Care My Way aim to address in cancer care?

Care My Way targets poor continuity caused by insufficient shared information between primary and specialist providers, especially around socio-cultural, communication, and care-relevant needs.

Who participated in the co-design process?

A co-design group of nine people was formed, including cancer survivors or carers from diverse cultural and linguistic backgrounds and healthcare providers working in primary care or as specialists.

What does the Care My Way resource include?

Care My Way is a person-held tool with four components that help individuals share information about themselves, communication approaches and support needs, their cancer journey and care, and care requirements related to cultural and faith backgrounds.

Sep 29, 2026

Upload by Miles