Patient Perspectives
Building bridges between science and lived experience How patient voices can shape global priorities in lymphedema care and research. By Juliana Conte, Lori Radke and Catharine Bowman Overview
At the 2025 International Lymphoedema Framework Conference, delegates gathered not only to exchange knowledge, but to build meaningful and lasting connections. The conference theme—Building Bridges: Connecting Global Perspectives—was brought to life through a featured patient-centred workshop that intentionally positioned patients and professionals as equal partners. The session created space for patients to share lived experience and collective wisdom, offering insight that cannot be captured through clinical data alone. While many people living with lymphedema feel unheard or marginalized within healthcare systems, those in attendance spoke openly about unmet needs, systemic gaps, and emerging priorities. Their contributions illuminated where current models fall short—and how meaningful, patient-informed progress can be made. The roundtable was collaboratively facilitated by members of the lymphedema community, including a researcher, a clinician, and a patient-advocate-researcher. Areas of uncertainty related to lymphedema care and research were gathered in advance and used to formulate discussion questions. Following the session, notes generated from roundtable discussions were reviewed to develop a patient-informed prioritization list intended to support future care development, education, and research initiatives. What follows is a glimpse into what happens
when patients are handed the microphone—and discussion is centered on their perspectives.
Their presence added valuable clinical and practical perspective, reinforcing the importance of multidisciplinary collaboration.
Why this workshop mattered
Living with lymphedema often reveals a persistent gap between clinical understanding and day-to-day reality. This workshop was designed to bridge that gap by creating a safe, inclusive environment where patients and professionals could engage in honest, meaningful dialogue. The primary objective was to identify gaps in current care and research through patient-defined priorities. By centering lived experience as a form of expertise, the session reinforced the value of collaboration in shaping systems that genuinely meet patient needs and reflect the realities of living with a chronic lymphatic condition.
Two disclaimers were shared at the outset:
1 Recommendations that could be harmful
or contraindicated would not be included 2 Participants were told to consult
healthcare providers before adopting any strategies discussed. Domains that guided the conversation
Discussions focused on five key areas of uncertainty: – Disease progression, causes, and diagnosis – Non-surgical management – Surgical management – Psychosocial impact and access to resources – Prevention
Workshop design
The session followed the World Caf é methodology (https://theworldcafe.com), a structured conversational approach developed to foster meaningful dialogue through shared etiquette and guiding principles.1 Participants were divided into four tables and rotated through six predetermined questions. Key points were documented on poster-sized notes displayed beneath corresponding domain labels on the wall of the room. All contributions were kept anonymous. Three tables were composed of patient experts, while one table consisted of lymphedema therapists and garment fitters.
Data analysis
Responses generated during the workshop were synthesized using reflexive thematic analysis.2 Notes recorded at each table were reviewed collectively, with recurring ideas grouped into shared themes across domains. This approach allowed patient-identified priorities to emerge organically while respecting individual experiences within broader community-level insights. What participants shared Diagnosis, education, and ongoing care
Across all domains, one message was clear:
Juliana Conte MSc, PhD, CPT, is a biochemist and certified personal trainer. Diagnosed with lymphedema in 2011, she is a former dual-sport NCAA athlete who promotes a holistic, science-informed approach to lymphedema care. Lori Radke BScPT, CLT, is a physiotherapist and certified lymphedema therapist. She coordinated the Rehabilitation Oncology program in Calgary, AB from 2009-2021, and continues to actively treat patients with Cancer Care Alberta. Catherine Bowman BHSc, is a PhD Candidate in the Department of Epidemiology and Population Health at Stanford University and MD Student at the University of Calgary. She is one of Forbes Magazine’s 30 Under 30.
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Spring 2026