Data Sharing

The initiative invites private companies to improve health data usability, offering potential benefits for research and policy but raising questions about public data stewardship and transparency.

In an era where real-world data platforms hold the transformative potential to illuminate the complexities of autism, the imperative of building trust and ethical integrity in research has never been more critical.

Health Data Leadership Institute panelist and CEO of Manifest MedEx, Erica Galvez, highlights the role of collaborations and partnerships to improve public health.

The lack of high quality, accessible national claims data has long been a roadblock to robust Medicaid research and subsequent evidence-based policymaking in the United States. While the release of TAF marked a significant improvement, research faculty with AcademyHealth’s Medicaid Data Learning Network (MDLN) outline important steps that state and federal policy makers can take to improve data quality, accessibility, and usability.

Greg Downing spoke with researchers and investigators about the implementation and impact of NIH policy changes regarding data management and sharing.

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.