A roadmap for patient-public involvement and engagement (PPIE): Recounting the untold stories of breast cancer patient experiences
- For development
- Summary created: 2024
Examines how storytelling workshops can foster patient-public involvement in breast cancer research, providing insight into patient perspectives on diagnosis, treatment, and recovery
This summary, including its recommendations and ideas, was created by Zahra Rattray and is based on original research. The original research itself was conducted in collaboration with the following researchers.
Breast cancer remains a leading cancer diagnosis among women in the UK, with over 4,200 new cases annually in Scotland alone. Although advancements in early detection and treatment have improved outcomes, patients face lasting impacts from both the disease and its treatment, highlighting the need for patient-centered care. This research explores how patient engagement through storytelling can help bridge gaps between patients, researchers, and clinicians, facilitating more empathetic care and relevant research. In the UK, breast cancer care standards increasingly prioritize patient engagement, yet public and patient involvement initiatives often remain tokenistic, failing to integrate genuine patient input throughout research processes. This study responds by using storytelling workshops with breast cancer patients treated in NHS Lanarkshire as a platform to elevate patient perspectives, providing opportunities to share and document experiences that can shape research priorities and improve patient-centered care.
Insights
Storytelling can significantly enhance patient engagement and foster connection among breast cancer patients, researchers, and clinicians.
Evidence
Across three workshops, 20 breast cancer patients shared their stories using personal objects, storytelling prompt cards, and open-mic audio recordings. Patients recounted their full experiences, discussing public misconceptions, the importance of self-advocacy, and the emotional complexity of their cancer journeys.
What it means
Facilitating open storytelling within a safe and inclusive setting empowered participants to share their experiences openly, bridging patient-clinician-researcher relationships and strengthening community support.
Public misconceptions about breast cancer can isolate patients and impede informed decision-making.
Evidence
Patients described experiencing ''denial of survivorship'' and enduring stigma due to prevalent misconceptions. Discussions revealed that knowledge gaps and misperceptions sometimes hindered patients' self-advocacy in treatment decisions.
What it means
Awareness of common public misunderstandings can inform patient education strategies, helping clinicians provide more personalized, supportive information and reduce patient isolation.
Workshops promoted patient empowerment and enhanced understanding of cancer research, providing patients with a framework to process their journeys.
Evidence
Feedback from patients indicated that the storytelling workshops helped them recognize their survivorship, connect with other survivors, and better understand ongoing research initiatives that might improve future breast cancer care.
What it means
These workshops helped patients integrate their personal experiences with broader research contexts, fostering resilience and community support.
Practical barriers to participation, including location, timing, and facilitator diversity, were effectively addressed through the workshop design.
Evidence
The research team used a local, accessible venue with appropriate facilities, recruited facilitators from diverse backgrounds, and adjusted session timings to maximize participant accessibility. Feedback showed this approach encouraged broader participation and created a comfortable setting for sensitive discussions.
What it means
Addressing logistical needs and ensuring diversity in facilitation supports safe, inclusive, and meaningful patient engagement in research.
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