0202208100258
STARDIT ID:
0202208100258State ongoing
Start 2021-01-21
Form updated 2024-11-01
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 (4)
Method: Formal group with Terms of Reference
Communication: online video calls, Loomio group
Compensation: volunteer
Stakeholder Panel (15) (link)
Task: Contribute to discussions about core outcome measures for improving dementia care, ranking outcomes as part of a modified e-Delphi method)
Method: Formal group
Recruitment: Public advert, invitation shared through networks
Communication: Online aysyncronous text-based discussion, video calls, online surveys
Compensation: volunteer
Impact: Influenced the core outcomes selected as part of the project
Participants of a multi-level modified Delphi consensus process (10)
Task: complete survey, identify outcomes and rank domains
Method: multi-level modified Delphi consensus
Communication: online survey, support offered and feedback invited via video calls, online discussion forums and emails
Compensation: other(Not paid)
Jack Nunn (link)
ID: 0000-0003-0316-3254
Task: helped write grant application, led the design and facilitation of the participatory action research process, faciltiated the Interim Stakeholder Reference Group, the Stakeholder Reference Group, managed online discussion platform Loomio, supported with evaluation and reporting relating to stakeholder involvement,
Method: Co-investigator, neutral facilitator
Recruitment: Email
Communication: email, video calls, online asynchronous text-based discussion, shared online documents
Compensation: paid
Declared interests: Jack Nunn was paid by the charity Science for All for his time working on this project (overseen by the Science for All Steering Committee and the Royal Society of Victoria). The charity Science for All was paid by the University of Queensland to provide support the project , including hosting Loomio and paying Jack Nunn to advise on and facilitate the involvement of staekholders
Compensation: volunteer
Outputs and impacts
Peer reviewed protocol for consensus building with people affected by dementia to develop a set of Core Outcome Measures for Improving Care (COM-IC) (link)
Core Outcome Sets (COS) for dementia care
15 outcomes to be measured in home care settings and 14 outcomes to be measured in residential aged care settings
A Rapid Review 'Measuring Core Outcomes for Dementia Care in Routine Care Settings'
Free text
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.