Sharing Medical Data for Health Research: The Early Personal Health Record Experience

• Published in: Journal of medical Internet research Vol. 12; no. 2; p. e14
• Main Authors: Weitzman, Elissa R, Kaci, Liljana, Mandl, Kenneth D
• Format: Journal Article
• Language: English
• Published: Canada Gunther Eysenbach MD MPH, Associate Professor 25.05.2010; Gunther Eysenbach; JMIR Publications
• Subjects: Age differences; Aged; Altruism; Application programming interface; Attitudes; Clinical information; Communication; Confidentiality; Consent; Consumers; Disease Outbreaks - classification; Disease Outbreaks - prevention & control; Educational Status; Female; Focus Groups; Gender differences; Health; Health information; Health Knowledge, Attitudes, Practice; Health records; Health Records, Personal; Health Services Research - organization & administration; Health status; Humans; Information Dissemination - methods; Information technology; Male; Medical records; Medical research; Medical technology; Middle Aged; Mixed methods research; Narratives; New England; Original Paper; Patient Compliance - statistics & numerical data; Payments; Personal health; Polls & surveys; Population Surveillance; Prospective Studies; Public health; Quality of care; Self evaluation; Sociodemographics; Software; Students; Transparency; Willingness; New England; United States > US

Engaging consumers in sharing information from personally controlled health records (PCHRs) for health research may promote goals of improving care and advancing public health consistent with the federal Health Information Technology for Economic and Clinical Health (HITECH) Act. Understanding consu...