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September 3, 2026Research Involvement and EngagementOpen Access

From patient to partner: reflections on being a patient leader in the COMFORT Nursing Programme

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Authors

MDMalene DeeleJFJeanette Finderup

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Overview

Commentary reveals the multifaceted contributions of patient leadership in advanced kidney disease research, highlighting the need for flexible partnerships that accommodate fluctuating health.

Key Points

  • To describe the first-person experiences, contributions, and practical considerations of serving as a patient leader within a nursing research programme for advanced kidney disease.
  • Reflective commentary detailing the lived experience of a patient leader living with kidney failure on dialysis and acting as an informal caregiver in Denmark.
  • Collaborative integration into the COMFORT Nursing Programme, covering research prioritization, material reviews, participant recruitment, and scientific dissemination.
  • Demonstrated that patient leaders contribute expertise beyond personal illness narratives, directly shaping study language, research design, and team priorities.
  • Identified critical engagement challenges related to high time demands and fluctuating health inherent to advanced kidney failure.
  • Emphasized that sustainable patient and public involvement models require structural flexibility to support diverse capacities, clinical needs, and participation preferences.

Cite This Study

Deele et al. (2026) studied this question.

synapsesocial.com/papers/6a9934ea636c6408cfa7cbbehttps://doi.org/10.1186/s40900-026-00973-7
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Also Consider

Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context:

  1. 1Patient and Caregiver Experiences and Attitudes about Their Involvement in Research in Chronic Kidney Disease2022 · 36 citations
  2. 2Patient participation—18 months of patient and staff perspectives in kidney care: A mixed methods study addressing the effects of facilitating staff person‐centredness2024 · 4 citations
  3. 3Perspectives of patient and public partners on their involvement in research2024
  4. 4Empowering patients in family medicine research: a case-study of patient partner involvement in educational and knowledge translation activities2026 · 1 citations
  5. 5How to become partners. Ways to enhance the quality of patient and public involvement in healthcare research2025