"Data Alone Doesn’t Tell the Story — Patient Voices Must Guide Us"
Abstract
Background:
Quantitative data provides a valuable overview of how we respond to psychosocial stressors within tumor streams, but it cannot fully capture how patients and their whānau (families) experience the cancer journey. At the heart of effective patient-centered care lies the lived experience—patient stories. Patient stories are central to this understanding, offering emotional, psychological, and social context that supports the collected data (CPSSS Data set).
Methods:
This work explores the integration of patient stories alongside quantitative data to inform and enhance clinical Mahi (practice). Drawing on research, models of psycho-social care and case examples, we can demonstrate how patient stories enrich clinician-patient engagement, empower shared decision-making, and help address disparities in care. We examine the role of psychosocial support teams in capturing, validating, and responding to these stories, especially within Māori and Pacifica communities, where storytelling traditions are often deeply embedded in cultural identity and Tikanga (cultural practices). These stories, often passed down or shared across generations, reflect resilience, trauma, and the broader impacts of healthcare encounters.
Discussions:
Incorporating patient voices into clinical settings has led to increased trust, more culturally responsive care, and better alignment between treatment plans and patient goals. Narratives have revealed gaps in service delivery, particularly regarding access barriers and perceived inequities. Moreover, psychosocial interventions—grounded in patient stories—have helped reduce deprivation, improve communication, and uphold dignity throughout the cancer journey. Clinicians who engage with patient stories report enhanced empathy and improved patient relationships.
Impact on practice:
While clinical decisions can often rely on data, it is the patient's story that reveals the deeper psychological and emotional impact of cancer treatment. Without these narratives, we risk missing the full human experience of care.