By: Lillian L Witting, MPH, CAPM, Senior Coordinator, Research and Programs  

Patient experience data is information collected about the impact of a disease or condition on the quality of life, experiences, perspectives, needs, and priorities of patients. These data can be gathered by various actors in the health ecosystem, including patients, family members, caregivers, patient organizations, researchers, and other stakeholders.  

Subsequently, patient experience data can then be used in downstream processes like value assessments, health technology assessments, clinical trial endpoints, real-world evidence, and patient-centered health care delivery. In addition, patient experience data has also been included as part of the 21st Century Cures Act which would assist the U.S. Food and Drug Administration with regulatory decision making to ensure that drug development and evaluation processes consider the patient perspective.  

However, one of the challenges in using and maximizing patient experience data is that it is often widespread across various published literature, which can make it time consuming to acquire and analyze.  

In 2022 and 2023, the National Health Council, in partnership with Applied Patient Experience, LLC., hosted a series of workshops with patients, patient organizations, industry, and other stakeholders to develop a document known as the ‘Patient Experience Dossier’ (PED). The PED centralizes the patient experience data, exploring the patient’s lived experiences, burden of disease and impact on daily life, patient perspectives on current and future treatments, and patient-centered outcomes. 

The findings from these workshops were presented to global and domestic partners, garnering interest in the development of disease-specific PEDs, which are now underway. The implications of these dossiers would inform various health care stakeholders, including patient organizations, practitioners, industry researchers, and policy makers to improve informed decision-making processes related to clinical interactions, regulation, treatment guidelines, and more.