New Frontiers For Pharmacoepidemiology: Cutting Edge Approaches to Data Collection and Integration

1. 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 and wearables will be illustrated, with examples from infectious disease, rheumatology, orthopaedics 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 data sources and approaches are sufficiently fit for a particular objective.
2. Requisites Statement
Entry level

3. Course Objectives

1) To understand how studies that use prospective data collection can be designed and used to support research goals, with a focus on data collected without primary reliance on medical care professionals and with a focus patient-generated health data and other sources
2) To recognize the methodologic and operational challenges of various use cases, including data curation, robust 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

4. Syllabus Outline

1. Opportunities and barriers for collecting and linking patient-generated health data for research, illustrated through examples [Will Dixon]
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 [Nancy Dreyer]
3. Game-changing evidence generation: Bringing data sources, including EHR, wearables, and medical product information, together for real-time impact [Mackenzie Herzog]
4. Creating complete high-quality data about patient journeys: why they are valuable and how to efficiently combine structured and unstructured medical records information with patient generated data [Kristen Hahn]