Indivo at Children’s Hospital Boston

Participants

• Clinical insitution: Children’s Hospital Boston
• IT vendor: Indivo by Children’s Hospital Informatics Program (CHIP) at Children’s Hospital Boston
• Patient group: pediatric patients
  

Key statistics

• As of September 2007, Indivo has been used and evaluated in trials of several hundred individuals, including patients at Children’s Hospital Boston and employees at the Hewlett-Packard Corporation.
• An initial deployment of 3000 patients at Children’s Hospital Boston has also begun, which will include three formal evaluation trials.
• 500 patients in Canada use Indivo in a clinical pilot roll-out as part of the MyOscar project.
  

Details

In 1998 researchers at the Children’s Hospital Informatics Program (CHIP) at Children’s Hospital Boston developed the concept of Indivo in a planning grant and began implementation in 1999. They built the Personal Internet-worked Notary and Guardian (PING, renamed Indivo in 2006) with funding from the National Library of Medicine (National Institutes of Health) under the Next Generation Internet Initiative,9 and the Advanced Networks pro-
grams.

Critical to the success of the model, the code base of Indivo has always been open source, the application programming interface (API) is fully published and open, and all communication and messaging protocols adhere to public and freely implementable standards.

The Indivo architecture is based on a subscription model which can integrate source data from diverse hospital EMRs as well as other electronically accessible healthcare databases. Indivo enables patients to maintain electronically collated copies of their records in a storage site of their choosing. Access, authentication, and authorization all occur on one of several available Indivo servers, which are also responsible for encryption of the record.

Indivo is a personally controlled health record (PCHR), which is a subset of PHRs. The idea of strict patient control is central to the Indivo project. Individuals decide who can read, write, or modify components of their records. The PCHR is a container for storing a copy of the data owned by the patient— once loaded into the system, the data within the PCHR is hers and hers alone. Subsequent access to the records is allowed only with patient consent—for identified, de-identified, and even aggregated data. This strict control model is intended to promote widespread adoption by inspiring complete confidence that the system will maintain privacy and confidentiality and further that the individual will be empowered to benefit from the value of her own health care information.

Indivo is now in production at Children’s Hospital Boston as part of the hospital’s new patient portal, and at the Massachusetts Institute of Technology as a PCHR for employees and students. It was recently announced that Children’s Hospital Boston will collaborate with Dossia (www.dossia.org), a nonprofit corporation created by AT&T, Applied Materials, BP, Cardinal Health, Intel, Pitney-Bowes, sanofi-aventis and Wal-Mart. The Children’s Hospital Informatics Program and the Dossia founders will work together to adapt a version of the existing, open-source Indivo system to provide secure, portable, personally controlled health records for employees and their dependents, plus retirees of Dossia’s founding companies. Indivo will remain an open source, independent, free product.

As of September 2007, Indivo has been used and evaluated in trials of several hundred individuals, including patients at Children’s Hospital Boston and employees at the Hewlett-Packard Corporation. Enrollment has begun in a trial of students and employees cared for by the university health service at the Massachusetts Institute of Technology. An initial deployment of 3000 patients at Children’s Hospital Boston has also begun, which will include three formal evaluation trials. 500 patients in Canada use Indivo in a clinical pilot roll-out as part of the MyOscar project. Indivo will be used in the Phase I personally controlled health record deployment for employees of the Dossia founders in late 2007. A large scale Phase II of the Dossia deployment is planned for 2008.

Sources

• Early experiences with personal health records. Halamka et al., JAMIA 2008.
• Riva A, Mandl KD, Oh DH, Nigrin DJ, Butte A, Szolovits P, Kohane IS. The personal internetworked notary and guardian. Int J Med Inform Jun 2001;62(1):27– 40.
• Mandl KD, Simons WW, Crawford WC, Abbett JM. Indivo: a personally controlled health record for health information exchange and communication. BMC Med Inform Decis Mak Sep 12 2007;7(1):25.
• Mandl KD, Szolovits P, Kohane IS. Public standards and patients’ control: how to keep electronic medical records accessible but private. BMJ Feb 3 2001;322(7281):283–7. 
• Kohane IS, Mandl KD, Taylor PL, Holm IA, Nigrin DJ, Kunkel LM. Medicine. Reestablishing the researcher-patient compact. Science May 11 2007;316(5826):836 –7.