COM-IC: Collaborative development of core outcome measures for dementia care

Introduction to the COM-IC project

Aims

The COM-IC Project aims to identify a set of core outcome measures for measuring quality of dementia care in Australia that are meaningful and relevant to people with lived experience of dementia.  

The project includes people with lived experience of dementia in the research design process through the Stakeholder Reference Group (SRG). The SRG ensures that people with lived experience of dementia are embedded in each stage of the research program.  

The investigators for this project are international researchers with specific expertise in core outcome measures and dementia care.  

Key dates

• 1 May 2023 - Stakeholder Reference Group established 
• 28 May 2023 - Consensus statement for core outcome measures is released.
• 31 July 2023 - Guidelines complete.
• 1 Sep 2023 - First publication for the COM-IC Project is released – the protocol paper. 
• 1 Jan 2024 - Feasibility study starts 
• 1 Apr 2024 - Feasibility study data ready for analysis 
• 1 Aug 2024 - Guidelines and implementation plan are finalised 
• 1 Dec 2024 - Project concludes 

Stages of research

There are 3 phases to the research:

• Alignment phase
• Harmonisation phase
• Results phase.

Alignment phase

The Alignment phase focuses on setting up the Stakeholder Reference Group and ensuring all members of the team understand how to conduct co-designed research. 

Alignment includes research to understand what outcomes measures are currently used in dementia care, both in Australia and internationally. 

The last activity in the Alignment phase is a consensus-building processes with investigators, the Stakeholder Reference Group, working groups, and industry partners. This activity will identify the preferred core outcome measures for dementia care. We will produce a Consensus Statement on Core Outcome Measures.

Harmonisation phase

The Harmonisation phase aims to develop guidelines for core outcome measures and implementing the guidelines in the community. The Stakeholder Reference Group and a dedicated working group will look at how the selected measures have been implemented and develop a guide for researchers, clinicians and aged care providers on how to select and implement them. A set of draft Guidelines and Implementation Plan will be produced. 

Results phase

The Results phase includes implementing the guidelines and collecting data in residential aged care services so we can assess whether they are practical, acceptable provide the sort of information required to understand and support dementia care. This phase is called the Feasibility Study and will run for 6 months.  

All phases incorporate the Stakeholder Reference Group, and each individual phase is supported by a Working Group, composed of people with lived experience and members of the investigator team.  

Stakeholder Reference Group

Role of the Stakeholder Reference Group

The Stakeholder Reference Group's roles include:

• Co-ordinate and collate diverse opinions, experiences and needs of the broader dementia community to inform research priorities. 
• Conduct research with an international research team. 
• Provide expert insight on the experience of living with dementia. 
• Be an advocate for inclusion of people affected by dementia in decisions that affect their care. 
• Advise the investigator team on effective ways of collaborating with people affected by dementia. 
• Develop and facilitate working groups responsible for project outcomes. 

Inclusion strategies for all stakeholders

Great efforts were made to ensure the inclusion of all stakeholders, including the use of:

• Workshops 
• Loomio 
• Online surveys 
• Multi-modal communication 
• Combination of collaboration in real-time and not in real-time. 
• Minimum 2 weeks to review and consider documents and decisions 
• Your suggestions 

• Tracy Comans, The University of Queensland
• Professor Leon Flicker, The University of Western Australia
• Professor Len Gray, The University of Queensland
• Mrs Danelle Kenny, The University of Queensland
• Professor Judy Lowthian, Bolton Clarke
• Dr Asmita Manchha, The University of Queensland*
• Dr Kim-Huong Nguyen, The University of Queensland
• Dr Jack Nunn, Science for All
• Glenys Petrie
• John Quinn