0202208100258
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The Core Outcome Measures for Improving Care (COM-IC) project Description: The Core Outcome Measures for Improving Care (COM-IC) project aims to identify a suite of outcome measures that are aligned with stakeholder goals; and develop guidelines for implementation that ensure Australia’s efforts to improve the lives of people living with dementia are unequivocally realised.
The COM-IC Project will use a participatory co-design strategy to incorporate practical knowledge, experience and preferences of all stakeholders as inputs in each step of the process. The participatory co-design framework will ensure the suite of core outcomes identified and recommended to evaluate dementia interventions and care delivery model are important, relevant, authentic and practical for each stakeholder group.
STARDIT ID:
STARDIT ID:
0202208100258
Dates
State ongoing
Start 2021-01-21
Form updated 2024-11-12
Report authors
Location
International
Aims
Primary Objective: Development of a comprehensive and appropriate suite of core outcome measures accompanied by guidelines (developed according to NHMRC guideline methodology) to monitor and evaluate impacts of care delivery models at individual, organisation and system levels, that are informed by all stakeholders.
To understand, report and collectively prioritise multiple stakeholders’ preferences on core outcome measures to evaluate success of interventions and care delivery models for people living with dementia
To map the core outcome sets for dementia into the indicators that are routinely collected in the Australian health and aged care systems
To achieve consensus of what to recommend as a suite of core outcome measures for dementia.
To determine best practices in measuring, collecting, curating, evaluating, reporting and translating the recommended suite of core outcome measures for dementia.
To develop methods to monitor the delivery of Commonwealth and State, Health and Aged Care services at the level of Local Hospital Networks.
Keywords
dementia
involvement
stakeholder involvement
participatory action research
core outcome measures
Category
research
Inputs
group of individuals
Stage: Implementation
Start: 2023-05-03
Stakeholder Reference Group (12) (link)
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
group of individuals
Interim Stakeholder Reference Group (4)
Method: Formal group with Terms of Reference
Communication: online video calls, Loomio group
Compensation: volunteer
group of individuals
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
group of individuals
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)
individual
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 stakeholders
individual
Kim Nguyen
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Kim Nguyen was paid by the University of Queensland and Trinity College Dublin for her time working on this project
individual
Len Gray
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Len Gray was paid by the University of Queensland for his time working on this project
individual
Leon Flicker
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Leon Flicker was paid by the University of Western Australia for his time working on this project
individual
Paula Williamson
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Paula Williamson was paid by the University of Liverpool for her time working on this project
individual
Susanna Dodd
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Susanna Dodd was paid by the University of Liverpool for her time working on this project
individual
Anna Kearney
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Anna Kearney was paid by the University of Liverpool for her time working on this project
individual
Colm Cunningham
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Colm Cunningham was paid by Trinity College Dublin and the University of New South Wales for his time working on this project
individual
Thomas Morris
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Thomas Morris was paid by Trinity College Dublin and the University of New South Wales for his time working on this project
individual
Dominic Trepel (link)
ID: 0000-0002-8689-6199
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Dominic Trepel was paid by Trinity College Dublin for his time working on this project
individual
Osvaldo P Almeida (link)
ID: 0000-0001-7396-9742
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Osvaldo P Almeida was paid by the University of Western Australia for his time working on this project
individual
Danelle Kenny
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol. Oversaw and managed the Secredtariat function of the Stakeholder Reference Group
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Danelle Kenny was paid by the University of Queensland and the Queensland Health for her time working on this project
individual
Alyssa Welch (link)
ID: 0000-0002-9780-5256
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Alyssa Welch was paid by the University of Queensland for her time working on this project
individual
Judy A Lowthian
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Judy A Lowthian was paid by Monash University and Bolton Clarke Research Institute for her time working on this project
individual
John Quinn
Task: contributed to the design and implementation of the research, including as a member of the Interim Stakeholder Reference Group - advising on the involvement of stakeholders in the project design
Method: co-investigator, Interim Stakeholder Reference Group member
Recruitment: targeted email
Communication: email, video calls, shared documents
Compensation: honourarium
individual
Glenys Petrie (Professional interest)
Task: contributed to the design and implementation of the research, including as a member of the Interim Stakeholder Reference Group - advising on the involvement of stakeholders in the project design
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Glenys Petrie was paid by the University of Queensland for her time working on this project
individual
Tiet-Hanh Dao-Tran (Professional interest)
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Tiet-Hanh Dao-Tran was paid by the University of Queensland for her time working on this project
individual
Asmita Manchha (Professional interest)
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Asmita Manchha was paid by the University of Queensland for her time working on this project
individual
Susan E Kurrle (Professional interest)
Task: contributed to the design and implementation of the research, analysis of the results, and writing of the COM-IC protocol
Method: Co-investigator
Recruitment: Email
Communication: email, video calls, shared online documents
Compensation: paid
Declared interests: Susan E Kurrle was paid by the University of Sydney for her time working on this project
organisation
Science for All (charity) (link)
ID: ABN: 37636063351 ACN: 636063351
Task: Advised and supported with stakeholder involvement, including methodological advice, pro-bono support with grant application and paid hosting and maintaining an online text-based discussion platform (loomio)
Method: Multi-Institutional working agreement (international)
Recruitment: Email
Communication: Email, video calls, shared working documents, in person meetings
Compensation: paid
Science for All is a charity registered in Australia ABN: 37636063351 ACN: 636063351
Outputs and impacts
publication/report/document
State: Completed
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)
Impact: Informed the co-design methodology for the entire project
other
State: Ongoing
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
publication/report/document
State: Completed
A Rapid Review 'Measuring Core Outcomes for Dementia Care in Routine Care Settings'
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.