Co-developing preoperative therapy for Dupuytren’s fasciectomy: lived experience and clinical expertise

Harnessing Lived Experience Expertise (LEE) and Clinical Expertise (CE) is essential for patient-centred research. Yet transparent reporting and critical reflection on their impact remain limited. This study details an iterative approach to integrating LEE and CE in the development of a preoperative therapy intervention for Dupuytren’s fasciectomy, evaluating their influence on study design and implementation. To assess how LEE and CE shape intervention development, influence research decisions, and to identify associated challenges, successes, and best practice for integration into clinical research. A structured, multi-phase approach is implemented using the GRIPP2 short-form, a validated Patient and Public Involvement reporting framework. Activities include forming a steering committee, engaging patients and clinicians in intervention development, co-creating study materials, and refining trial protocols. Feedback is gathered through online meetings, surveys, and direct consultations. A LEE contributor co-authors this study, ensuring patient perspectives were embedded throughout. Integrating LEE and CE leads to significant refinements in study design, including development of intervention content aligned LEE/CE priorities, clearer and more accessible patient-facing materials and outcome measures that reflect real-world patient concerns. Challenges include sustaining contributor engagement over time and balancing patient and clinician priorities. Embedding LEE and CE strengthens feasibility, and acceptability of intervention and research processes. Lessons learned emphasise the need for flexible, iterative engagement strategies and structured reporting to optimise involvement and enhance impact. Future work should explore how reporting frameworks support sustained contributor engagement and how LEE and CE shape accessibility, relevance and implementation of clinical research. This study details how people with lived experience of Dupuytren’s disease, alongside clinicians, contribute to the design of a preoperative therapy intervention to improve Dupuytren’s fasciectomy outcomes. They help shape study materials, refine the intervention, and prioritise outcome measures. A patient advocate co-authors this study, with reflections from both clinician and patient perspectives included.

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Publication Details

Journal
Research Involvement and Engagement
Published
2026-02-12
DOI
https://doi.org/10.1186/s40900-026-00849-w
Primary Topic
Dupuytren's Contracture and Treatments
Type
article
Field-Weighted Citation Impact
0.00
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article

Co-developing preoperative therapy for Dupuytren’s fasciectomy: lived experience and clinical expertise

Timothy Bernard Crook, Mel Hughes, Emma Kavanagh, Carol Clark et al.
Research Involvement and Engagement
Dupuytren's Contracture and Treatments
article

Co-developing preoperative therapy for Dupuytren’s fasciectomy: lived experience and clinical expertise

Timothy Bernard Crook, Mel Hughes, Emma Kavanagh, Carol Clark, Tahra Babiker-Moore, Anna Schurer
article en

Abstract

Harnessing Lived Experience Expertise (LEE) and Clinical Expertise (CE) is essential for patient-centred research. Yet transparent reporting and critical reflection on their impact remain limited. This study details an iterative approach to integrating LEE and CE in the development of a preoperative therapy intervention for Dupuytren’s fasciectomy, evaluating their influence on study design and implementation. To assess how LEE and CE shape intervention development, influence research decisions, and to identify associated challenges, successes, and best practice for integration into clinical research. A structured, multi-phase approach is implemented using the GRIPP2 short-form, a validated Patient and Public Involvement reporting framework. Activities include forming a steering committee, engaging patients and clinicians in intervention development, co-creating study materials, and refining trial protocols. Feedback is gathered through online meetings, surveys, and direct consultations. A LEE contributor co-authors this study, ensuring patient perspectives were embedded throughout. Integrating LEE and CE leads to significant refinements in study design, including development of intervention content aligned LEE/CE priorities, clearer and more accessible patient-facing materials and outcome measures that reflect real-world patient concerns. Challenges include sustaining contributor engagement over time and balancing patient and clinician priorities. Embedding LEE and CE strengthens feasibility, and acceptability of intervention and research processes. Lessons learned emphasise the need for flexible, iterative engagement strategies and structured reporting to optimise involvement and enhance impact. Future work should explore how reporting frameworks support sustained contributor engagement and how LEE and CE shape accessibility, relevance and implementation of clinical research. This study details how people with lived experience of Dupuytren’s disease, alongside clinicians, contribute to the design of a preoperative therapy intervention to improve Dupuytren’s fasciectomy outcomes. They help shape study materials, refine the intervention, and prioritise outcome measures. A patient advocate co-authors this study, with reflections from both clinician and patient perspectives included.

Research Involvement and EngagementVol. 12(1)
Loughborough University (GB), BCS — The Chartered Institute for IT (GB), Dorset County Hospital (GB), Bournemouth University (GB)
Partnerships for the goals
Openalex Percentile: Top 59%
Dupuytren's Contracture and Treatments
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