Involving people living with dementia as co-researchers in core outcome set methodology

Morbey, Hazel and Harding, Andrew and Swarbrick, Caroline and Ahmed, Faraz and Elvish, Ruth and Keady, John and Williamson, Paula and Reilly, Siobhan Theresa (2019) Involving people living with dementia as co-researchers in core outcome set methodology. In: 7th Meeting of the COMET Initiative (VII), Thursday 15th and Friday 16th November 2018, De Rode Hoed, Amsterdam, 2018-11-15 - 2018-11-16.

Abstract

The high variation of outcomes measured across studies evaluating nonpharmacological health and social care community-based interventions for people living with dementia is compounded by the strong indication that chosen outcomes may not reflect what is important to people living with dementia. This obstructs comparisons for effectiveness and makes the interpretation of results difficult. Furthermore, the rigor of trials must be called in to question if outcomes (or outcome constructs) do not reflect what is important to those with lived experiences. One way to address this is to use and report a core outcome s et (COS) - a list of core outcomes that should be measured and reported as a minimum across all relevant effectiveness trials. If COSs are to be relevant and responsive, a critical issue for COS designers is how to incorporate the views of those with lived experience. While this vital activity is often not done, done poorly, or approached as a single isolated activity, studies have shown people with lived experience often have different perspectives on what outcomes are important when compared with professional groups. This presentation, part of the Neighbourhoods and Dementia programme (funded by the ESRC/NIHR under key commitment 12 of the first Prime Minister's Challenge on dementia), reports on the development of a COS methodology that has positioned people living with dementia as co-researchers throughout the wider research process. Specifically we report on how we have facilitated and included the views of people living with dementia at every stage of the research process – from involvement in determining what outcomes are important, consultation on the development of research tools, and participation in an accessible Delphi survey and consensus workshop approach.