Putting it into Practice

Title: Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development.
Author: Hazel Morbey, Andrew J. E. Harding, Caroline Swarbrick, Faraz Ahmed, Ruth Elvish, John Keady, Paula R. Williamson and Siobhan T. Reilly.
Date Published: 2019
Reference: Trials 20:12
Are service users or carers authors: No/Not Known

Abstract: This article describes how the authors worked with people living with dementia to design an accessible Delphi survey. They were using the survey to involve people living with dementia in developing a core outcome set for clinical trials. (A core outcome set is a recommendation of 'what' should be measured and reported in all trials in a specific area.) The researchers consulted patients and carers through one-to-one and group sessions to ensure that all stakeholders could take part in the survey. The researchers reflect that this required considerable time and resource and the researchers’ expertise and support to ensure meaningful and productive involvement.

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Categories: journal article
lessons from direct experience of involvement
designing of research
involving seldom heard groups

Date Entered: 2019/02/18

Date Edited: 2019/02/18

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