0202208100258
State ongoing
Start 2021-01-21
Form updated 2023-07-04
Inputs
Start: 2023-05-03
Task: provide non-binding advice to the research team
Method: Formal group with Terms of Reference
Recruitment: Public link to application form, shared on social media and via email from study team members
Communication: online video calls, Loomio group
Barriers: learning to use a new online tool
Compensation: paid
The Core Outcome Measures for Improving Care (COM-IC) Stakeholder Reference Group provides non-binding advice to the research team
Interim Stakeholder Reference Group
Method: Formal group with Terms of Reference
Communication: online video calls, Loomio group
Enablers: video calls were tiring, access to working technology (tablet computers) was limited
Compensation: volunteer
Outputs and impacts
Why is this research important?
People living with dementia require services from multiple providers, across all care settings, ranging from primary care (GP and specialist), acute (hospital), allied health and social care. People with young onset dementia and those from culturally and linguistically diverse (CALD) backgrounds often require different types of services. While the ultimate care objective for all stakeholders is better health and quality of life for the care recipients, interventions and care models delivered in different settings and for different populations naturally lead to a wide range of instruments and approaches to report similar outcomes or events and to measure success (clinical efficacy and effectiveness, care quality and efficiency). Different assessment instruments reduce comparability across care models, leading to the slow translation of evidence into practice to improve care quality. It also results in both fragmentation and duplication of service provision across providers, creating inefficiencies in healthcare and aged care systems.
This research aims to increase comparability in dementia outcome measures, improve the consistency of impact measures at all levels of care, decrease lag between research and implementation of best-practice care, thereby improving quality and consistency of care delivery, ultimately improving the experience, health outcomes and quality of life for everyone affected by dementia.