29 August 2024
In Brisbane, at the recent World Down Syndrome Congress 2024, a joint presentation by a researcher and 2 consumer advisors showed the value of engaging health service consumers with lived experience in research.
Consumer advisors Claire Mitchell and Luka Langdon got involved in a research project exploring whether and how adults with Down syndrome and their support people record hospital visits and appointments. Both Claire and Luka have Down syndrome. Their conference presentation was about their experience with the project.
University of Queensland (UQ) researcher Laura Ryan explained it was their first time presenting at a conference as a team, and their involvement was possible because of a Health Translation Queensland (HTQ) microgrant.
“Without HTQ’s microgrant, I don’t know how I would have been able to engage them in the research or enable them to co-present with me at the conference,” Ms Ryan said.
“Some of us were understandably nervous about the prospect of co-presenting, but after this experience, we plan to present at another event.
“The microgrant program has supported the development of confidence and competence in research activities that include consumers as research partners.
“With this support, we have created an impactful collaboration, with flow-on effects to future research and health service improvements.”
Ms Ryan works part-time as a senior hospital social worker with Metro South Health and a health service researcher at Gold Coast Health, investigating ways to enhance hospital patient autonomy and empowerment.
Her PhD with UQ focuses on patient-led recording for adults with Down syndrome and their support people. For this project, she engaged 2 consumers to ensure the project was shaped by lived experience.
“The general population thinks about recording and do record their appointments and clinical encounters on their phone or tablet, but I wanted to understand how people with Down syndrome and their support network respond to this approach,” Ms Ryan said.
“Both Claire and Luka have relevant experience in the hospital and responded to an EOI about the project shared by Down Syndrome Queensland.
“Using HTQ’s microgrant, I reimbursed them for their time to partner with me on the research design, how to recruit and interview participants and analyse the data.
“They have met the authorship criteria, so when I write up my findings, they will have the opportunity to be named authors on the paper – another first for them.
“HTQ’s microgrant enabled me to engage these consumers in health service research in a meaningful way, and their involvement has added so much value to the project.”
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Health Translation Queensland acknowledges the Traditional Owners and their custodianship of the lands on which we live, work, and play. We pay our respects to their Ancestors and their Descendants, who continue cultural and spiritual connections to Country. We recognise their valuable contributions to Australian and global society.
