Indivo will be introduced at Children's Hospital Boston in fall 2007 as part of a new Patient Portal. Unique among PHRs, Indivo allows patients to own and control -- not merely view -- a single, unified complete medical record, providing for patient-controlled information exchange with clinical care providers, researchers and public health authorities.

In 2005, the HHS awarded a total of $18.6 million to the four Consortia, hoping to move the nation toward President Bush's goal of instituting national PHRs by 2014 by creating a uniform architecture for health care information that can follow consumers throughout their lives.

"With the nation on the verge of adopting personal health records, we're at a critical juncture," says Kenneth Mandl, MD, MPH, an attending physician in emergency medicine at Children's Hospital Boston and a member of the Children's Hospital Informatics Program (CHIP), who participated in the January 25 demonstration of Indivo. "The nation has the opportunity to design and implement records that are fully aligned with patients' needs for privacy and control, yet meet the needs of public health and clinical care."

At Children's Hospital Boston, Indivo is seen as a clinical necessity: many of its patients, who come from all over the country, have complex medical conditions and have received care at multiple institutions that rarely exchange information with one another.

"It will be especially satisfying to be able to integrate patient data in a way our fragmented health care system hasn't allowed in the past," says Daniel Nigrin, MD, chief information officer at Children's.

CHIP pioneered development of personally controlled health record infrastructure in the 1990s, receiving the first federal grants to do so, and has conducted several successful field tests of Indivo, the first in 2002. Indivo is being used nationally and internationally; 2007 deployments include the university health services at Harvard University and the Massachusetts Institute of Technology. Indivo is also networked with the Massachusetts SHARE (Simplifying Healthcare Among Regional Entities), a regional initiative operated by the Massachusetts Health Data consortium.

A patient's Indivo record is readily available over the Web from any location, using access rules set by the patient and encryption to protect patients' privacy. No proprietary software is needed to access a record, but patients have complete authority to grant or withhold access to their record by individuals or institutions. They may also opt to allow their data to be used in research studies and in public health surveillance, while retaining complete confidentiality and security. For the pediatric setting, the Indivo team at Children's is developing provisions for creating records for minors, obtaining informed consent and sharing data with schools.

"Patient-controlled health records change the fundamental relationship between patients and their information," says Isaac Kohane, MD, PhD, CHIP's director. "We think patients should be able to adjudicate uses of their information."

Indivo field tests:
-- In 2002, the Children's Hospital Boston's emergency department conducted a field test in which 500 patients with strep throat used Indivo to access their throat-culture results online.
-- In 2003, with the Massachusetts Department of Public Health, an Indivo prototype was developed for use under emergency and disaster conditions. The prototype allowed health authorities to track each person affected by a disease outbreak, and enabled patients to get updates on the outbreak and learn whether their treatment should be changed and about side effects of their medication.
-- From 2005-2006, Indivo was deployed as part of an employee health program at the Hewlett Packard Corporation that sought to improve influenza control. As part of a CDC-funded project, employees' personal health records were linked with public-health information systems, with the goal of increasing immunizations and reducing flu cases.

To read more about Indivo and view a demonstration, visit:
www.childrenshospital.org/research/Site2029/mainpageS2029P27sublevel42.html

The Children's Hospital Informatics Program (CHIP) is a multidisciplinary applied research program at Children's Hospital Boston and the Harvard-MIT Division of Health, Sciences and Technology. CHIP focuses in three areas: bioinformatics, public health informatics (including biosurveillance), and clinical informatics. Its diverse faculty includes physicians trained in information science, computer scientists with expertise in the biomedical sciences, mathematicians, and epidemiologists. CHIP provides shared resources to develop innovative information technologies with the goal of both enhancing biomedical research and improving patient care. CHIP also serves as the bioinformatics core for several national genomics investigations. For more information, visit: www.chip.org.