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Background <p>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.</p> Method <p>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.</p> Results <p>PPI contributions led to important refinements, including simplifying terminology, removing ambiguous or burdensome items, and enhancing overall usability.</p> Discussion <p>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.</p>

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Using Patient and Public Involvement to Develop a Survey for Economic Evaluation in Dementia Research

  • 期刊论文

  • 发表日期：

    2026年7月20日

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  • Gillian Eaglestone,
  • Charlotte Stoner,
  • Rosana Pacella,
  • Paul McCrone

摘要

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.