New paper published in Trials on co-research with people living with dementia: https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-018-3069-6
Dr Andrew Harding, Dr Hazel Morbey and Rita Brady presented the core outcome set work at the BSG Conference in Manchester in July. Presentations focused on presenting the thirteen core outcomes and the role of people living with dementia in their role as co-researchers in designing research tools. Both presentations were well received and important links with international colleagues were made.
The WP3 team are currently working on phase 3 of developing a core outcome set for people living with dementia at home in their neighbourhoods and communities. Phase 3 will involve a review of existing outcome measurement instruments. The review will assess the relevance of existing outcome measurement instruments against the scope of the thirteen core outcomes that were found to be core after the Delphi survey and consensus meeting in phase 2. The final part of the review will be to consult with trialists and dementia researchers to gain their perspective and feedback on the findings. At the end of this phase, the team will have an indication of the suitability of existing outcome measurements in relation to the core outcomes. For example, it will be possible to see which core outcomes have adequate existing measurement instruments and which ones do not.
The fourth and final phase of the core outcome set work is a stated preference survey and will run in parallel to the review phase. This work will be led by Professor Linda Davies at Manchester, and will establish the relative preferences of the core outcomes.
The Work Programme 3 research team are keen to find out which outcomes are important to people living with dementia. The team completed its Delphi survey in February 2018. This was a two round process involving people living with dementia, carers, health & social care professionals, policy makers and researchers (n=288 R1, with an 84% response rate for R2). Following the Delphi survey, a successful Consensus Meeting was held at Lancaster University to which participants in the Delphi survey were invited to attend. The team were delighted to have such a high proportion of people living with dementia and their carers attend the day and the meeting was chaired by experienced and skilled facilitator Katherine Cowan. The results of the Consensus Meeting were fed back to the participants in the meeting and will be written up and published over the coming months. The team will also conduct reviews and use existing reviews to assign any existing robust outcome measures to corresponding outcomes found to be core through the Delphi & Consensus Meeting.