Eaglestone, Gillian ORCID: https://orcid.org/0000-0001-9860-8679, Stoner, Charlotte ORCID: https://orcid.org/0000-0002-1536-4347, Pacella, Rosana ORCID: https://orcid.org/0000-0002-9742-1957 and McCrone, Paul ORCID: https://orcid.org/0000-0001-7001-4502 (2026) Using patient and public involvement to develop a survey for economic evaluation in Dementia research. Applied Health Economics and Health Policy. ISSN 1175-5652

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Abstract

Background
This methodological paper reflects on how people with lived experience of dementia contributed to the development and refinement of a survey intended to identify priorities for future economic evaluation in dementia research. Although Patient and Public Involvement (PPI) is increasingly recognised as essential for producing relevant and ethical health research, people living with dementia are rarely included in PPI activities related to health economics, where outcomes are often predetermined by decision-making bodies.

Method
To support the development and refinement of the survey, a small bespoke PPI group comprising four individuals with lived experience in England reviewed draft survey materials through online meetings and helped ensure the survey was accessible and meaningful through feedback on survey clarity, accessibility, and response options.

Results
PPI contributions led to important refinements, including simplifying terminology, removing ambiguous or burdensome items, and enhancing overall usability.

Discussion
The findings demonstrated the significant value of involving PPI contributors early and collaboratively, showing that co-design approaches enrich the relevance and sensitivity of research tools. The experience also highlighted the need for tailored support and an accessible introduction to health economic concepts for PPI contributors, alongside broader participation across study stages and engagement in dissemination activities.

Item Type:	Article
Identifier:	10.1007/s40258-026-01061-3
Subjects:	Medicine and health > Clinical medicine > Dementia
Date Deposited:	24 Jul 2026
Dates:	Date Publication status 2 July 2026 Accepted 20 July 2026 Published
School, department or research centre:	The Geller Institute of Ageing and Memory School of Medicine and Biosciences
URI:	https://repository.uwl.ac.uk/id/eprint/15255
Sustainable Development Goals:	Goal 3: Good Health and Well-Being

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