The Queensland Aphasia Research Centre (QARC) brings together people with aphasia, their families and friends, clinicians and researchers in the collaborative development of innovative and novel health interventions that transform lives. At NHMRC's Research Excellence Awards in March, QARC received the 2023 NHMRC Consumer Engagement Award, which recognises an individual, a group of individuals or an organisation that has made a long-term contribution to consumer and community involvement in health and medical research.
QARC’s development was driven by the lived experience of the consumers and communities it serves. Its priorities have been co-designed with people with aphasia, their families and speech pathologists. The QARC team are recognised leaders and innovators in developing and conducting research that directly addresses the health and social needs of people living with aphasia.
Learn more about aphasia in this first-person piece from Professor David Copland, a speech pathologist from the University of Queensland and Director of QARC.
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Aphasia is a devastating and common language and communication disability that is largely unknown in the community. The sudden loss of language experienced after a stroke impacts the person and their family and friends in a way that is hard to imagine, given how we take everyday communication and the connections it enables for granted. An occasional name you forget, a slip of the tongue or not understanding a foreign language are small glimpses into the constant challenges facing people with aphasia every day.
There are currently more than 140,000 people living with aphasia in Australia with another 22,000 people newly diagnosed every year.1
People know of conditions like Parkinson’s disease and cerebral palsy and yet aphasia is more common. People with aphasia have some of the poorest outcomes of all major health conditions in terms of quality of life. People living with aphasia systematically experience exclusion from meaningful activities, social interactions and the research that drives the services they receive. Aphasia often leads to increased social isolation and significantly increases risk of depression. Many people living with aphasia are unable to return to work or meaningfully participate in everyday activities we take for granted.
This situation and the unacceptably poor outcomes for people living with aphasia are what drives our work at the Queensland Aphasia Research Centre (QARC). We are a relatively new centre, established in 2019 through initial funding from philanthropists and the University of Queensland and in partnership with the Metro North Surgical Treatment and Rehabilitation Service in Brisbane.
From the outset, QARC has been driven by the lived experience of the consumers and communities it serves, ensuring research activities are meaningful, appropriate, useful, and focused on what consumers want addressed. The centre’s priorities are co-designed with people with aphasia, family members and speech pathologists from across Queensland.
By including consumers and community members in all stages of research, not just as participants, we ensure that people with aphasia are represented and heard throughout the entire research process.
This enables interventions to be meaningfully translated into health practice. Current projects focused on developing technology to support communication were sparked by an initial idea raised by a person living with aphasia. While it might seem obvious to ask people living with a condition what they want out of a new intervention or support, all too often these most important voices are not heard until later on in the development or implementation of a treatment.
We also maximise participation and inclusion of people with aphasia by ensuring all forms of communication are adapted and tailored to ensure accessibility. This approach is essential to the integrity and authenticity of the activities, and to genuinely conducting consumer activities in ways that support inclusion, empowerment, and participation, mirroring the overall vision of the centre.
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Our team have led developments in the theory and evidence-base for consumer and community involvement in aphasia. In practical terms, our members have developed resources including training modules for the Australian Stroke Foundation, with a multi-disciplinary stroke research team (including stroke survivors), enabling consumer activities in research. This work provides concrete ways to address the often systematic exclusion of people with aphasia from research.
This award is an incredible honour for all the people living with aphasia, the families and friends, researchers, and clinicians who work together at QARC. We hope this recognition raises awareness of the needs of people with aphasia and the importance of partnering with consumers to understand these needs and find solutions to drive better outcomes.
1 Speech Pathology Australia (n.d.) 'Aphasia', Speech Pathology Australia website, accessed June 1 2023