A New Cancer Diagnosis is Never Good—Patient Choice, Busy Health Systems, and Health Information Access
Menée aux Etats-Unis par enquête auprès de 2 412 patients atteints d'un cancer, cette étude analyse leurs expériences et leurs préférences concernant la communication du diagnostic de la maladie
The 2016 21st Century Cures Act advanced US national efforts to improve interoperability of electronic health information and strengthen patient engagement. The Cures Act is the most recent step in more than 25 years of regulatory reform expanding patient access to health information. Earlier laws include the bipartisan Health Insurance Portability and Accountability Act of 1996 and the 2009 Health Information Technology for Economic and Clinical Health Act which created the Electronic Health Record Incentive Program. These laws clarified that patients seeking access to their health information should not face unnecessary barriers. Under the laws, health systems, professionals, and health information technologies storing patients’ clinical records may not generally withhold information, delay access, or impose unreasonable fees. The information blocking rule within the Cures Act further codifies this principle, requiring health systems, health technology developers, and health information exchanges to provide immediate access to electronically stored health information upon request by patients or their designees, except in narrowly defined exceptions.
JAMA Network Open , commentaire en libre accès, 2026