Self-reported patient experiences in a peer-support community: What do cancer patients value?

TL;DR

This study explores what cancer patients value through their self-reported experiences in an online peer-support community, highlighting themes like support, empowerment, and quality of life.

Contribution

The study introduces unguided podcast narratives as a novel method to uncover patient values in oncology, beyond traditional surveys.

Findings

Six core themes of patient value emerged: peer support, empowerment, healthcare professional relationships, quality of life, cancer as an opportunity, and individuality.

Patients emphasized reclaiming agency and redefining life priorities through mutual peer understanding and solidarity.

Ambivalent but pivotal relationships with healthcare professionals were revealed as part of patient experiences.

Abstract

Using unguided podcast narratives offers a unique and original opportunity to access patient experiences and understand what patient’s 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.

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.

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.

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.

Figures