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Updated: Aug 6, 2026
06:16
Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Using Patient and Public Involvement to Develop a Survey for Economic Evaluation in Dementia Research
Gillian Eaglestone1, Charlotte Stoner2, Rosana Pacella3
1Institute for Lifecourse Development, University of Greenwich, London, UK. gillian.eaglestone@greenwich.ac.uk.
Applied Health Economics and Health Policy
|July 20, 2026
Summary
Involving people with lived experience of dementia in health economic research significantly improves survey relevance and usability. Early and collaborative co-design ensures research tools are sensitive and meaningful for dementia research priorities.
Area of Science:
- Health Economics
- Dementia Research
- Patient and Public Involvement (PPI)
Background:
- Patient and Public Involvement (PPI) is crucial for relevant and ethical health research.
- People with dementia are underrepresented in health economic research PPI activities.
- Economic evaluation outcomes are often predetermined by decision-making bodies.
Purpose of the Study:
- To reflect on the contribution of people with lived experience of dementia to survey development.
- To identify priorities for future economic evaluation in dementia research.
- To enhance the relevance and accessibility of research tools through PPI.
Main Methods:
- A bespoke PPI group of four individuals with lived experience of dementia was formed.
- The group reviewed draft survey materials via online meetings.
- Feedback focused on survey clarity, accessibility, and response options.
Main Results:
- PPI contributions led to simplified terminology and removal of ambiguous items.
- Survey usability was enhanced through feedback on accessibility and response options.
- Refinements ensured the survey was meaningful and relevant to people with dementia.
Conclusions:
- Early and collaborative PPI significantly enriches the relevance and sensitivity of research tools.
- Co-design approaches are valuable for developing dementia research priorities.
- Tailored support and accessible introductions to health economics are needed for PPI contributors.
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