New Video Available: Meaningful Engagement with PWLEs and Research - Dissemination and Data Analysis

Watch the full presentation now in the Media Center

Episode 1 is now available in the PURPOSE Media Center. This inaugural session examines how integrating PWLEs as active co-investigators refines study design, analytical frameworks, and translation across the research continuum.

Featuring Jeffrey C. Lotz, PhD and patient advocate Tom Norris, MPA, BCPA, the discussion details their ongoing partnership within the NIH HEAL Initiative Back Pain Consortium (BACPAC). The presenters explore the Pain Experience Pilot (PEP), an innovative methodology utilizing natural language processing to translate multi-dimensional biomedical phenotyping into patient-validated narratives. By converting qualitative lived experience into computable data elements, this framework bridges the gap between biological surrogates and patient-centered endpoints.

Key Learnings for Researchers & Investigators:

• Vectorization of Patient Narratives: Discover how the PEP framework converts AI-translated, patient-validated narratives into text embeddings, allowing qualitative patient context to be integrated alongside high-dimensional omics, biomechanical, and imaging datasets in predictive models.
  
  

• Mitigating Biomarker Reductionism: Understand how high-dimensional phenotyping without patient context risks targeting statistical noise, and how narrative validation prevents diagnostic outputs from inducing negative psychophysiological feedback loops.
  
  

• Structural Research Co-Design: Gain actionable paradigms for embedding PWLEs as funded co-investigators who actively shape grant architecture, data interpretation, and patient-facing dissemination tools.

Watch the full episode recording in the Media Center, and join the conversation by sharing your thoughts or questions in the Lived Experience discussion forum.