"以患者为中心"理念下患者体验数据的研究现状与应用OA

Patients,as direct experiencers of illness,subjects of clinical trials,and participants in medical practices,have the most immediate and clear understanding of their disease experiences and health needs.Consequently,drug regulatory agencies in many countries have successively proposed the"patient-centered"concept,hoping to increase the pathways for patients to actively participate in medical decision-making,drug development,and clinical trials through patient experience,feelings,and needs,and other patient experience data.This article systematically reviews the evolution of patient experience data,organizes its definitions,scope,sources,and collection methods,analyzes the application value and key links of patient experience data,and provides references for further research.The study found that although patient experience data can be widely used in the development of clinical outcome assessment tools,drug development,regulatory decision-making,and the improvement of clinical trial design,there is still a lack of standardized collection processes,standardized identification and screening technologies,and correct application of methodological guidance.Based on this,future efforts require researchers,patient groups,and government agencies,and other stakeholders to work together to improve and promote the collection,identification,screening,and application of patient experience data.