Evaluating organisational implementation of patient and public involvement and engagement in research: lessons from a four-year hospital-wide strategy

Abstract Background Patient and public involvement and engagement (PPIE) is increasingly promoted as a marker of high-quality health research. Although many research organisations have adopted institutional strategies to stimulate PPIE, little evidence exists on how such strategies influence research practice over time and how their impact should be evaluated. Objective To evaluate the implementation of a hospital-wide PPIE strategy and to explore what four years of monitoring can reveal about organisational change and the challenges of evaluating institutional PPIE initiatives. Methods Annual surveys were distributed to research leaders across approximately 50 research units at a Danish university hospital between 2021 and 2024. Survey data included closed-response indicators of PPIE activities and open-ended questions about experiences, barriers and perceived value. Descriptive statistical analyses and qualitative content analysis were conducted. Results Substantial organisational infrastructure was established, including a dedicated centre for user involvement, institutional support activities and ongoing monitoring. However, activity-based indicators of PPIE remained largely stable across the study period. Involvement continued to be concentrated in early phases of research and strategic targets were only partially achieved. In contrast, qualitative responses suggested evolving understandings of PPIE, increasing specificity in collaboration practices and growing recognition of the value of patient involvement. These findings indicate that organisational adaptation may occur before measurable changes become visible through conventional indicators. Conclusions Four years of institutional investment in PPIE resulted in organisational infrastructure and indications of learning but limited measurable change in reported activities. The findings suggest that evaluations of organisational PPIE strategies should move beyond activity counts and consider whether existing evaluation approaches adequately capture processes of learning, adaptation and culture change.

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Publication Details

Journal
Research Square
Published
2026-11-10
DOI
https://doi.org/10.21203/rs.3.rs-11377082/v1
Primary Topic
Mental Health and Patient Involvement
Type
preprint
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preprint

Evaluating organisational implementation of patient and public involvement and engagement in research: lessons from a four-year hospital-wide strategy

Anne Kragh-Sørensen, Astrid I.W.A. Janssens, Lene Berit Skov Bjerregaard, Anne Wettergren Karlsson et al.
Research Square
Mental Health and Patient Involvement
preprint

Evaluating organisational implementation of patient and public involvement and engagement in research: lessons from a four-year hospital-wide strategy

Anne Kragh-Sørensen, Astrid I.W.A. Janssens, Lene Berit Skov Bjerregaard, Anne Wettergren Karlsson, Katrine Wind Nielsen, Anna Skat Nielsen, Mette Blicher Amlund, Anders Friis Olsen
preprint en

Abstract

Abstract Background Patient and public involvement and engagement (PPIE) is increasingly promoted as a marker of high-quality health research. Although many research organisations have adopted institutional strategies to stimulate PPIE, little evidence exists on how such strategies influence research practice over time and how their impact should be evaluated. Objective To evaluate the implementation of a hospital-wide PPIE strategy and to explore what four years of monitoring can reveal about organisational change and the challenges of evaluating institutional PPIE initiatives. Methods Annual surveys were distributed to research leaders across approximately 50 research units at a Danish university hospital between 2021 and 2024. Survey data included closed-response indicators of PPIE activities and open-ended questions about experiences, barriers and perceived value. Descriptive statistical analyses and qualitative content analysis were conducted. Results Substantial organisational infrastructure was established, including a dedicated centre for user involvement, institutional support activities and ongoing monitoring. However, activity-based indicators of PPIE remained largely stable across the study period. Involvement continued to be concentrated in early phases of research and strategic targets were only partially achieved. In contrast, qualitative responses suggested evolving understandings of PPIE, increasing specificity in collaboration practices and growing recognition of the value of patient involvement. These findings indicate that organisational adaptation may occur before measurable changes become visible through conventional indicators. Conclusions Four years of institutional investment in PPIE resulted in organisational infrastructure and indications of learning but limited measurable change in reported activities. The findings suggest that evaluations of organisational PPIE strategies should move beyond activity counts and consider whether existing evaluation approaches adequately capture processes of learning, adaptation and culture change.

Research Square
University of Southern Denmark (DK), Odense University Hospital (DK), University Medical Center Utrecht (NL), Zealand University Hospital (DK)
Mental Health and Patient Involvement
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