2022 Health Datapalooza and National Health Policy Conference
A gathering for health data and policy innovation.
The Blueprint: November 2021 Updates
The November edition of the Blueprint provides an update on the end of the Paradigm Project and continuation of efforts to create real and lasting change in how we do, communicate, and use HSR.
Navigating the Ethics of a New Research Landscape: Emerging Data, Methods, and Practices
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.
Trust-Building and Health Data Sharing across Stakeholder Groups: The Value of Convening
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.
Experts in Child Health Services Research Reflect on 2020 and Look Ahead to 2021
Members of AcademyHealth’s Child Health Services Research Interest Group Advisory Committee reflect on five key areas of advancement of Child HSR during 2020, and consider the COVID-19 pandemic’s impact on children.
Enhancing Patient-Centered Outcomes Research Data Infrastructure to Address the Opioid Crisis
The severity and the complexity of the opioid crisis require research that is both patient-centered and supported by robust data infrastructure. Several U.S. Department of Health and Human Services (HHS) projects are working across agencies to build the nation’s capacity for exactly this kind of research.
An Overview of the Medicaid Outcomes Distributed Research Network
The Medicaid Outcomes Distributed Research Network (MODRN) supports evidence-based state health policy and practice with a focus on transforming Medicaid-based health care, including improving the patient experience with care, improving the health of populations, and reducing the per capita cost of health care.
Largest Real-World Database for Pro Bono COVID-19 Research Goes Live
A coalition of organizations is offering free access to the largest real-world data sets in the U.S. to support rapid COVID-19 research.
New Initiative Aims to Build a Model Open COVID-19 Patient Data Registry Network
The Robert Wood Johnson Foundation’s Health Data for Action program, managed by AcademyHealth, is supporting a collaboration between Health Care Cost Institute (HCCI), CareJourney, and a network of health systems to increase the availability of standardized, actionable information on COVID-19 impact and progression.
Inaugural Health Data Impact Award Honors Work on Patients’ Rights to Access Personal Health Data
Award winner Deven McGraw guided the U.S. Department of Health and Human Services’ efforts to engage technology developers and patients with transparent and effective regulatory frameworks for the use of health data.