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 (Print), 1179-1896 (Online) (doi:10.1007/s40258-026-01061-3)

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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
Uncontrolled Keywords:	dementia, economic evaluation, patient and public involvement, PPI
Subjects:	H Social Sciences > HB Economic Theory R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
Faculty / School / Research Centre / Research Group:	Faculty of Education, Health & Human Sciences Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development > Centre for Inequalities Faculty of Education, Health & Human Sciences > School of Health Sciences (HEA)
Last Modified:	21 Jul 2026 08:31
URI:	https://gala.gre.ac.uk/id/eprint/53970

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