Course Aim  This lively course will provide an overview and critical assessment of new approaches to prospective data collection in pharmacoepidemiology, looking beyond electric medical records (EMR) and health insurance claims to direct-to-"patient" data generation and data linkage. Uses of person-generated health data, including smartphone apps, wearables and social media, will be illustrated, with examples from COVID-19, rheumatology, oncology and professional sports. There will be active discussion about the value of these new approaches, when are they feasible and acceptable to patients, frequently encountered challenges, and how to recognize when these approaches are sufficiently fit for a particular objective.

Requisites Statement  Entry level 

Course Objectives  1) To understand how studies that use prospective data collection, without primary reliance on medical care professionals, and particularly from patient-generated sources and other sources can be designed and used to support research goals  2) To recognize the methodologic and operational challenges of various use cases, including linkage of person-generated health data with other real-world data, and review strategies used to address these challenges 3) To be aware of the strengths and limitations of these approaches, including the unique perspective that these different tools offer 

Syllabus Outline 1. Opportunities and barriers for collecting and linking patient-generated health data for research, illustrated through examples  2. Using person-generated health data to understand long COVID-19 infections and vaccine side effects: Operational and scientific challenges and how they can be addressed  3. Game--changing evidence generation: Bringing data sources together for real-time impact  4. Experiments in social media to better understand patient experiences and beliefs