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

TL;DR

This study co-designed a tool called Care My Way to help cancer patients share socio-cultural and health information with providers to improve care continuity.

Contribution

The novel contribution is a co-designed, person-held resource addressing socio-cultural communication gaps in cancer care.

Findings

Care My Way includes four components for sharing personal, communication, cancer journey, and cultural care requirements.

The tool aims to improve relational and informational continuity of care between primary and specialist settings.

The project involved diverse stakeholders, including cancer survivors, carers, and healthcare providers, in the co-design process.

Abstract

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.

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.

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.

Person‐held tools such as Care My Way provide an opportunity for people affected by cancer to identify critical information about themselves and their care, including the socio‐cultural information relevant to their care. Using Care My Way puts the individual at the heart of decision‐making about the information they wish to share and may provide a low‐cost, accessible and flexible method for individuals to share information about themselves, their culture and their health between primary and specialist settings in a bid to improve quality of care. Evaluative studies are now required to determine the effectiveness of this tool for improving continuity of care.

This study is part of a 4‐year project that was designed with consumers who have lived experiences of cancer as a patient or carer from diverse cultural and linguistic backgrounds in Australia. The project included consumer investigators and a Consumer Advisory Group throughout the lifecycle. The co‐authors of this manuscript include consumers (C.P., J.E.) who were members of the co‐design group who wished to contribute as authors.

Figures