title: The personal internetworked notary and guardian.
abstract: In this paper, we propose a secure, distributed and scaleable infrastructure for a lifelong personal medical record system. We leverage on existing and widely available technologies, like the Web and public-key cryptography, to define an architecture that allows patients to exercise full control over their medical data. This is done without compromising patients' privacy and the ability of other interested parties (e.g. physicians, health-care institutions, public-health researchers) to access the data when appropriately authorized. The system organizes the information as a tree of encrypted plain-text XML files, in order to ensure platform independence and durability, and uses a role-based authorization scheme to assign access privileges. In addition to the basic architecture, we describe tools to populate the patient's record with data from hospital databases and the first testbed applications we are deploying.
authors.affiliation: Children's Hospital Informatics Program, Division of Endocrinology, Children's Hospital, 300 Longwood Avenue, Boston, MA 02115, USA.
authors.forename: A
authors.initials: A
authors.lastname: Riva
authors.forename: K D
authors.initials: KD
authors.lastname: Mandl
authors.forename: D H
authors.initials: DH
authors.lastname: Oh
authors.forename: D J
authors.initials: DJ
authors.lastname: Nigrin
authors.forename: A
authors.initials: A
authors.lastname: Butte
authors.forename: P
authors.initials: P
authors.lastname: Szolovits
authors.forename: I S
authors.initials: IS
authors.lastname: Kohane
mesh_terms: D016494:Computer Security; D006801:Humans; D020407:Internet; D016347:Medical Records Systems, Computerized / Q000458:organization & administration*; D018907:Privacy; D011634:Public Health; D012106:Research