Health care data are generated and stored in a wide variety of formats. How can data users access and share data in order to learn from it? Health services researchers and data users are looking at data sharing to improve health and health care.
A recent report from the National Academies of Sciences, Engineering, and Medicine helps the Office of the Assistant Secretary for Planning and Evaluation (ASPE) with its work to enhance the data infrastructure for patient-centered outcomes research, prioritizing a holistic view of an individual’s health, data linkages and more.
This year’s Health Datapalooza, taking place in February 2023, builds on a nearly 15-year legacy of data policy and innovation. Greg Downing traces this forum’s unique history, highlighting its beginning as a catalyst for data liberation to the current focus on inspiring innovative data application to transform health and health care.
2021 NCHS/AcademyHealth Data Visualization Challenge Winners highlight the benefits of pulling data from multiple national data sources to build a data visualization demonstrating the disproportionate impact of the U.S. gun crisis on young Black men in urban areas.
Health data and research ethicist, Dr. Camille Nebeker, reviews existing and emerging ethical considerations for health research using new data and methods, and uses an original framework to analyze several case examples – that demonstrate the relationships between domains of research and key ethical principles.
Health services researchers and others with expertise in open science issues suggest several next steps for the field including developing a common open science terminology, creating an open science interest group, designing open science trainings, and leveraging federal law to increase access to data.
A report from the National Academy of Medicine (NAM) found that a lack of trust was a key barrier to data sharing. Expert panelists from Cincinnati Children’s Hospital, the National Partnership for Women and Families, PCORI, and the NAM delved into this topic at the recent Health Datapalooza and National Health Policy Conference.