ORIGINAL RESEARCH article
Front. Psychol.
Sec. Psycho-Oncology
This article is part of the Research TopicInnovations in Psychological Care for Oncology and Palliative Settings: A Holistic ApproachView all 36 articles
Self-Reported Patient Experiences in a peer-support community: what do cancer patients value?
Provisionally accepted
- 1Institute for Interdisciplinary Innovation in healthcare (I3h), Faculty of Medicine, Université Libre de Bruxelles, Belgium, Brussels, Belgium
- 2Pôle Santé, Université Libre de Bruxelles, Brussels, Belgium
- 3Department of Public Health and Primary Care, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium
- 4Centre for IT and IP Law, Faculty of Law, KU Leuven, Leuven, Belgium
- 5Artesis Plantijn Hogeschool Antwerpen, Antwerp, Belgium
- 6DR Square B.V., Overijse, Belgium
- 7Department of Marketing, Innovation and Organisation, Faculty of Economics and Business Administration, Ghent University, Ghent, Belgium
- 8Institute for Interdisciplinary Innovation in healthcare (I3h), Faculty of Medicine, Université Libre de Bruxelles, Brussels, Belgium
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Background: Using unguided podcast narratives offers a unique and original opportunity to access patient experiences and understand what patients value in their care journey in developing true patient-centered oncology models. Online health communities contain a wealth of information, including unsolicited patient experiences that may go beyond what is captured by guided surveys or patient-reported outcome instruments. This study describes patient experiences reported in a peer support community to gain insight into what patients share amongst each other and what they value. Methods: A purposive sample of 31 unguided, French-speaking self-reported patient narratives were collected from the podcast "Naitre princesse, devenir guerrière" registered between 2021 and 2024. Episodes included patient (n = 30) and tandem patient-professional (n = 1) voices, reflecting diverse cancer types, treatment stages, and lived experiences. A transdisciplinary team, including the podcast founder, conducted the thematic analysis to identify patterns of patient values across narratives. Results: From patient narratives, six core themes of patient value emerged: (peer) support, empowerment, relationship with healthcare professionals, quality of life, cancer as an opportunity, and individuality. Narratives underscored patient value as rooted in reclaiming agency, redefining life priorities, and engaging in meaningful action. Participants revealed the irreplaceable role of peers in providing mutual understanding and solidarity, alongside ambivalent but pivotal relationships with healthcare professionals. Conclusion: Self-reported narratives from peer communities offer empirical evidence into patients' priorities and lived realities, revealing what patients identify as meaningful in their cancer pathways. These findings accentuate the importance of transdisciplinary analysis of patient experiences beyond clinical outcomes and physician reports. Online health communities represent a promising but underexplored arena for understanding and integrating patient values into care, research, and policy. Future research should further examine their role in shaping participatory and value-driven health systems.
Keywords: oncology, Online health community, Patient value, peer support, self-reported patient experience, transdisciplinarity
Received: 16 Oct 2025; Accepted: 06 Jan 2026.
Copyright: © 2026 Horicks, Lalova-Spinks, Léonard, Remy, Taels and Stevens. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
* Correspondence: Florence Horicks
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