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

Abstract

Meaningful patient and public involvement (PPI) is increasingly recognised as an important component of health research. However, relatively few publications describe patient involvement from the first-person perspective of a patient partner or patient leader. This commentary reflects on my experience as a patient leader in the COMFORT Nursing Programme, a research programme developing person-centred approaches to symptom management for people living with advanced kidney disease and their informal caregivers. I reflect on my experiences as a person living with kidney failure, an informal caregiver, and Chair of the Danish Kidney Association while working alongside researchers in the COMFORT Nursing Programme. I describe what motivated my involvement, how an equal partnership was developed, and how my lived experience, patient-leadership role and wider contact with patients and informal caregivers contributed to the research. My involvement included reviewing study materials and language, contributing to research discussions and priorities, supporting recruitment of patient partners, and participating in dissemination. I also reflect on the time and commitment required for intensive patient involvement, the challenges posed by fluctuating health, and the need for research teams to accommodate different preferences and capacities for participation. My experience illustrates that patient leadership can extend beyond sharing personal experiences to contributing to research priorities, methods, communication and dissemination. Patients and informal caregivers can bring forms of expertise that complement clinical and research knowledge. Meaningful involvement should therefore provide genuine opportunities to influence research while remaining flexible enough to accommodate individual needs, health circumstances and preferred levels of participation. Patients and informal caregivers are increasingly recognised as important partners in health research. Their experiences can help researchers focus on issues that matter to people living with a condition. However, relatively few publications describe, in the patient’s own words, what it is like to work as a patient partner and patient leader in research. In this commentary, I describe my experience as a patient leader in the COMFORT Nursing Programme, which aims to improve symptom management for people with advanced kidney disease and their informal caregivers. I live with kidney failure and receive dialysis, and I am also an informal caregiver for my husband, who receives dialysis. As Chair of the Danish Kidney Association, I also bring experience of patient advocacy and contact with a wider community of patients and informal caregivers. I describe why I became involved, how I worked alongside researchers as a member of the team, and how I contributed to the programme. My involvement included reviewing study materials and language, contributing to research discussions, helping recruit patient partners, and taking part in publications and other ways of sharing the research. My experience has shown me that patients can contribute much more than their personal stories. At the same time, being closely involved in research requires time and energy and may not be suitable for everyone, particularly when living with fluctuating health. Meaningful patient involvement should therefore be flexible and recognise that people have different experiences, skills, needs and capacities. Researchers should create opportunities for patients and informal caregivers to contribute in ways that are meaningful and manageable for them.