Transforming Patient Generated Data Into Insight: A Case Study in Collaborative Lung Cancer Research
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Opportunity:
A national patient advocacy organization sought to empower individuals living with a specific genetic subtype of lung cancer to become active participants in their treatment journey. Working in collaboration with a community-based patient network, the organization launched an initiative to better understand patients’ lived experiences across three domains: demographics and risk factors, diagnostic and treatment pathways, and the day-to-day impacts of the condition. The growing success of this initiative created an opportunity to engage external research partners to analyze the data and prepare it for publication.
Our Solution:
The Evidence to Practice team partnered with the patient-advocacy organization and the affiliated patient network to develop two peer-reviewed manuscripts describing the diagnostic and treatment experiences of individuals with this specific molecular subtype of lung cancer. By leading the manuscript development process, Evidence to Practice helped ensure that valuable patient-contributed data were translated into actionable insights, preventing data waste, elevating patient voices, and making meaningful contributions to the field’s understanding of this condition.