Methods Principles for Using Patient-Provided Information to Improve Real-World Evidence for Patient-Centered Value Assessment

Study Objective

  • To understand how patient-provided information (PPI) - gathered through meaningful patient engagement - can be translated by researchers into more patient-centered real-world data (RWD) research designs that reflect patients’ lived experiences.
  • To develop a set of good-practice principles that can be disseminated to various real-world evidence (RWE) stakeholders.


Patient-Provided Information (PPI): broadly encompasses the entirety of information that can be collected from an interaction with a patient. The focus should be the patients view on their disease(s)/condition(s), desired attributes for treatments, experiences with treatments, benefit- risk preferences, and desired goals and outcomes.

Real-world data (RWD) and Real-world evidence (RWE): Data and data-derived interpretation that is based on sources other than conventional, randomized, controlled studies and offers insight to clinical, coverage, payment, and patient decisions.

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