Curriculum co-design gives people with lived experience of disability a voice in their health carers’ training

A collaborative project between the Office of the Public Advocate and the University of Melbourne is learning from a Disability Lived Experience Advisory Committee what healthcare professional student training could – and should – include to improve health outcomes.

People with disability have diverse life experiences, skills and abilities, and make significant contributions to society.

“Every person, with or without a disability, has the right to equal access to health care, to participate as fully as possible in making decisions about their own health, and should receive the support they need to do so,” according to the Victorian Office of the Public Advocate (OPA).

But despite this, people with disability still face significant challenges to achieving equity in healthcare.

By listening to the voices of people with lived experience of disability, healthcare professionals can better understand the barriers this cohort experiences in accessing health and healthcare.

The OPA says healthcare professionals may exacerbate barriers if they do not develop the necessary skills to communicate  with people with disability, and to effectivelyvsupport people with disability to make and communicate their own health decisions.

To address this, a team from the Collaborative Practice Centre (CPC) in the University of Melbourne’s Faculty of Medicine, Dentistry and Health Sciences (MDHS), has worked in partnership with the OPA Healthy Discussions project team to ensure the health profession curricula has lived experience of disability ‘inbuilt’.

Donya Eghrari, Project Officer from the CPC, says the human and health rights of people with disability need to be honoured by healthcare professionals, which means treating people with disabilities the same as any other member of the community, while recognising there may be a need for extra time and resources to support decision making.

“Health professional training and curriculum, coupled with the experience of placement that students receive during their years of training have a great impact on instilling these principles for future practice,” says Carolyn Cracknell, who leads healthcare partnerships and work-integrated-learning in MDHS.

“While higher education training may incorporate principles for working with people with disability, it is not well known the extent to which health professional curricula has been informed by or, better yet, co-designed with people who have lived experience of disability.”

Joanne Bolton, CPC Lead on Curriculum says co-design and participatory methods are powerful in bringing the voice of people and the community to the centre of curriculum design.

“A person-centred approach to healthcare benefits from curriculum design that is directly led and shaped by the lived experience of those who will be its end users,” she says.

“In my experience of developing curriculum for health professions education, it’s rare to have direct involvement let alone authentic co-designed processes with people with lived experience of disability.

“We felt really privileged to be invited into the Office of the Public Advocate community, to work together on this project.

“The co-design approach has been such a powerful way to centre the voice of people with lived experience, and we think this process provides such impactful learning for our students and staff by having curriculum design directly led and shaped by the lived experience of those who the curriculum is all about.”

A Melbourne Disability Institute seed grant has also enabled the team to further explore the co-design experience over the next 12 months.

Initial steps with the Office of the Public Advocate

In 2022, Joanne and Carolyn were introduced to the Healthy Discussions project team from OPA to learn about a video resource they’d produced (called HealthCARE Conversations) to support better communication between people with disability and healthcare professionals.

The Healthy Discussion project team, funded by the Australian Department of Social Services and delivered by OPA, were promoting the video resource as a possible training tool for healthcare professionals and students.

Joanne and Carolyn recognised the authentic opportunity to be invited into this community and to engage in a meaningful co-design process for curriculum design.

Video acknowledgement: CPC researchers acknowledge the great work of Victoria’s Public Advocate Dr Colleen Pearce AM, Dr Jane Tracy, and the Healthy Discussions Steering Committee for their leadership in producing the HealthCARE conversations video.

Designing the curricula on inter-professional communication in the disability context

The design process involved members of OPA’s Lived Experience Advisory Committee, OPA’s Healthy Discussions project and Systemic Advocacy Unit, as well as representatives from the medical and allied health disciplines at the University.

Over the past 18 months, learning outcomes, key messages and themes were co-created by OPA’s Lived Experience Advisory Committee, the team from OPA, and the CPC.

The purposefully slow and careful process created a genuinely co-designed e-module pilot currently being tested with MDHS medical students led by Dr Vinita Rane and Dr Natalie Fraser.

Next up, speech pathology (Stephanie Weir, Dr Elaina Kefalianos and Dr Camille Paynter ), social Work (Dr Nicole Hill) and physiotherapy (Dr Deb Virtue) will come on board, and the final module will take into account feedback from students, educators, and the Lived Experience Advisory Committee.

“Together, we found co-design to be a joyous and humbling experience, learning from people with lived experience of disability, as co-creators of knowledge,” Donya says.

“Building relationships of trust takes time, effort and critical reflection.

“The shared insights from people with lived experience of disability, informed by direct engagement with healthcare professionals and their frequent experience of navigating the health system, adds incredible value to the curricula.”

The OPA says by listening to the voice of people with lived experience of disability future health practitioners can develop positive strategies to effectively engage and communicate with people with disability. This will help realise everyone's right to  make informed decisions about their own health.

More about this e-module and the work of the Collaborative Practice Centre at MDHS

Contact: CPC-4Health@unimelb.edu.au.