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Distinguishing features of Indivo
The Indivo personally controlled record differs from other personally health record efforts in important ways:
- IndivoHealth has a strict emphasis on patient control and ownership of medical information and offers the detailed technical infrastructure to provide this control. Hence we use the term “personally controlled health record” to describe IndivoHealth. This distinguishes IndivoHealth from all other PHR efforts.
- The IndivoHealth system was developed with federal funding, is open source and free.
- IndivoHealth is not a portal (a portal, frequently confused with a personally controlled health record, is an entity enabling a patient to get a view of, but not own or control a portion of their health data from a single institution.)
- IndivoHealth contains electronic record data (or scanned in paper reports) from clinical encounters, not just claims data or patient-entered data.
- The security model is extremely strong with each record individually encrypted. Hence, even if a server or backup tapes are commandeered, the individual records cannot be opened.
- Source code for IndivoHealth is available to all developers, enabling ready local customization of IndivoHealth, or interoperation of IndivoHealth with vendor products.
- The XML-based storage allows for a flexible data model, and IndivoHealth developers are working with the HITSP process to ensure broad interoperability.
- IndivoHealth subscribes to data updates from hospital information systems, practices, and regional health information organizations, hence IndivoHealth records can be found by the regional record locator service and individuals can populate IndivoHealth records with data from a regional health information organizations (RHIOs) also known as subnetwork organizations (SNOs).
Philosphy
IndivoHealth
is the world's first personally controlled record
system, enabling a patient to own a complete, secure, copy of
her medical record, integrating health information across sites
of care and over time. The emphasis is on security and patient control. IndivoHealth is a free, open source application built to public standards. The
source code and documentation can be found at http://indivohealth.org and http://sourceforge.net/projects/pinghealth/.
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 recordas
well as creation, collation, annotation, modification, dissemination,
use, and deletion of the record 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.
and describe the architecture to achieve this vision in a JAMIA
paper.
Support
All of the funding for IndivoHealth
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 IndivoHealth to ensure that the design supports patients across a broad range of health literacy. The Centers for
Disease Control and Prevention have just funded IndivoHealth
under the Health
Protection Research Initiative. IndivoHealth is a centerpiece in the new PHIConnect CDC Center of Excellence in Public Health Informatics.
Development History
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 them 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 for them 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
the Secretary of Health and Human Services, and which lays out
a consumer-centric plan for the National Health Information
Infrastructure.
There is international interest in IndivoHealth
in the UK, Canada, and Norway. We are cooperating closely with the Canadian
National Research Council on bi-national deployments.
The Leading Edge: IndivoHealth and the Genome
Use of the IndivoHealth record to control personal genetic information is described in a recent New England Journal of Medicine paper.
The data model to support personal genomic storage is described in a 2006 BMC Genomics Paper.
Current Deployments and Activities
- Harvard Teaching Hospitals. IndivoHealth is the patient controlled medical record for Children’s Hospital Boston, and we are addressing head on the complex issues around consenting minors for access to their medical information. IndivoHealth is also being rolled out at the Beth Israel Deaconess Medical Center.
- RHIO/SNO. IndivoHealth has become the patient controlled gateway to the Massachusetts SHARE (Simplifying Healthcare Among Regional Entities--MA-SHARE) regional health information organization (RHIO). (RHIOs are now sometimes alternatively called subnetwork organizations -- SNOs)
- Department of Health and Human Services Prototype PHR. Under funding from
HHS through Office of the National Coordinator for Health Information Technology (ONC), we are developing the national prototype personally controlled health record, integrated into
a regional and interregional data exchange. This is a joint project with the Markle Foundation, CSC, Dr. John Halamka (the HITSP chair and Chief Information Officer of Harvard Medical School) and the Indiana Health Information Exchange.
- Employee Health. IndivoHealth has been deployed as part of an employee heatlh program at the Hewlet Packard Corporation.
- University Heatlh. The Massachusetts Institute of Technology and Harvard University are adopting IndivoHealth as a personally controlled heatlh record for all health service enrolees--students and employees.
- Development. We are working with large vendors including the Cerner Corporation as well as many small vendors through an open source development initiative. Cerner is making their IQ Health product compatible with IndivoHealth.
Selected publications
Mandl KD, Szolovits P, Kohane IS. Public standards
and patients' control: how to keep electronic medical records
accessible but private. BMJ. 2001;322(7281):283-287.
Adida B, Kohane IS. GenePING: secure, scalable management of personal genomic data. BMC Genomics 2006;7(1):93.
Kohane IS, Altman RB. Health-information altruists--a potentially critical resource. N Engl J Med 2005;353(19):2074-7.
Simons WW, Mandl KD, Kohane IS. The PING personally controlled electronic medical record system: technical architecture. J Am Med Inform Assoc. Jan-Feb 2005;12(1):47-54.
Sax U, Kohane I, Mandl KD. Wireless Technology Infrastructures for Authentication of Patients: PKI that Rings. J Am Med Inform Assoc 2005;12(3):263-8.
Porter SC, Kohane IS, Goldmann DA. Parents as partners in obtaining the medication history. J Am Med Inform Assoc 2005;12(3):299-305.
Porter SC, Fleisher GR, Kohane IS, Mandl KD. The Value of Parental
Report for Diagnosis and Management of Dehydration in the Emergency
Department. Ann Emerg Med 2003;41:196-205.
Riva A, Mandl KD, Oh DH, et al. The personal
internetworked notary and guardian. Int
J Med Inf. 2001;62(1):27-40.
Porter SC, Kohane IS. Optimal data entry by patients: effects
of interface structure and design. Medinfo. 2001;10(Pt 1):141-145.
Nigrin DJ, Kohane IS. Glucoweb: a case study of secure, remote
biomonitoring and communication. Proc AMIA Symp. 2000:610-614.
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