Concept & Research

Concept

The Indivo system is essentially an inversion of the current approach to medical records, in that the record resides with the patients and the patients grant permissions to institutions, clinicians, researchers, and other users of medical information. Indivo is a distributed, web-based, personally controlled electronic medical record system that is ubiquitously accessible to the nomadic user, built to public standards, and available under an open-source license.

The concepts evolve from our 1994 publication, the Guardian Angel Manifesto and our early innovations with electronic patient-doctor communication.

We put forth principles to guide development of patient controlled records in a 2001 BMJ paper:

  • Electronic medical record systems should be designed so that they can exchange all their stored data according to public standards
  • Giving patients control over permissions to view their record (as well as creation, collation, annotation, modification, dissemination, and use) is key to ensuring patients' access to their own medical information while protecting their privacy
  • Many existing electronic medical record systems fragment medical records by adopting incompatible means of acquiring, processing, storing, and communicating data
  • Record systems should be able to accept data (historical, radiological, laboratory, etc) from multiple sources including physician's offices, hospital computer systems, laboratories, and patients' personal computers
  • Consumers are managing bank accounts, investments, and purchases on line, and many turn to the web for gathering information about medical conditions; they will expect this level of control to be extended to online medical portfolios.

In a piece in the New England Journal of Medicine, called Tectonic Shifts in the Health Information Economy, we argue that the PCHR platform will transform the academic medical research enterprise and call for a national debate so that our society can "make an informed decision about how the goals of improving health care, and the twin beacons of maximizing patient autonomy while minimizing health risk, should be served in the context of a seismic change in the locus of control, curation, interpretation, and guardianship of patient information."

We also describe the architecture to achieve this vision in a 2004 JAMIA paper, and elaborated on the architecture and its role in health information exchange in a 2007 BMC Medical Informatics Paper. A overview of the architecture can be found here. The image below shows how Indivo interacts with the health care system.

Indivo Platform Architecture

Funding & Initial Development

All of the funding for Indivo development has come from the National Library of Medicine (NIH) through the Next Generation Internet Phase I (1998), and Phase II (1999) awards, and most recently by the Scalable Information Infrastructure (2003) awards. The National Library of Medicine is now investing further in Indivo to ensure that the design supports patients across a broad range of health literacy. The Centers for Disease Control and Prevention have just funded Indivo under the Health Protection Research Initiative, and Indivo is a centerpiece in the new PHIConnect CDC Center of Excellence in Public Health Informatics.

In 1999, we worked with CareGroup on the initial development of PatientSite, a portal for patients at the Beth Israel Deaconess Medical Center (a Harvard Medical School teaching affiliate), giving patients limited access to their electronic medical records and enabling electronic communication with their physicians.

In 2002, with a grant from the Markle Foundation we developed approaches to diffusion and adoption of the personally-controlled health record. In 2003, we participated in the Markle-funded "Connecting for Health" Personal Health Working Group, and co-wrote the final report. This report informed the 2004 Framework for Strategic Action, which was authored by the Secretary of Health and Human Services, and which lays out a consumer-centric plan for the National Health Information Infrastructure.

Publications