A paper published in the latest issue of the open access publication Journal of Medical Internet Research evaluates consumers' experiences with the Indivo personally controlled health record (PCHR) system.
The system was the first of its kind, developed by researchers in the Children's Hospital Informatics Program (CHIP) more than a decade ago and adapted by PCHR providers including Dossia, Microsoft and Google.
This is the first report to be published that investigates consumers' response to a platform PCHR and subsequent implications for policy and design, researchers say.
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The two-year study was conducted by CHIP researchers at a university-based health center, where Indivo was promoted to all members of the university community, including undergraduate and graduate students, faculty, staff, retirees and affiliates of the site and setting, regardless of a person's status as a patient of the health center.
More than 300 people, ranging in age from 18 to 83, participated in the study via focus groups, interviews, usability testing or a full demonstration of Indivo and shared their experiences, feedback and suggestions with the study team.
"This research comes at an important time," said co-author Kenneth Mandl, MD, MPH, director of the Intelligent Health Laboratory within CHIP. "The Obama Administration has made health information technology a priority and we have a unique window of opportunity now [to change the systems] before widespread adoption of PCHRs is realized."
Researchers detected the following beliefs:
· A general feeling of disconnect between people and their health information
· A dramatic overestimation of the extent to which health information data are digitized and flowing in support of patient care
· A lack of awareness of the existence of PCHR technology
· High levels of interest in PCHRs once participants had exposure to one
· A perception that PCHR benefits outweigh their potential risks
· Differing opinions between older and younger participants regarding the risks and opportunities associated with sharing health information
· A need for help understanding technical or clinical issues
· Concerns about quality, accuracy and locus of responsibility for maintaining records
· Uncertainty about appropriate and safe read/edit access policies
· Consumer demand for technology that exceeded technical sophistication of current PCHRs
The co-authors believe the acceptance of the Indivo PCHR platform with study participants is an indication of the rapidity at which PCHRs will be adopted once the technology has progressed further. In the meantime they advocate for continued evaluations of PCHR use and broader discussions about technical and policy approaches, including the development of clear guidelines, lines of responsibilities and methods of educational and technical assistance.
Indivo is the original personally controlled health record system. Created in 1998 by CHIP researchers, the Indivo model is built to public standards, is web-based and emphasizes patient control, portability, and security of health and wellness information. Indivo integrates health information across sites of care and over time, and is free and available under an open-source license.
This research was supported by the Centers for Disease Control and Prevention and the National Institutes of Health/National Institute on Alcohol Abuse and Alcoholism.
Source: Journal of Medical Internet Research