Preserving Patient Privacy and Confidentiality in the Era of Personal Health Records

Although efforts to provide patients with increased access to their medical information through personal health records (PHRs) have accelerated in recent years,1 legal, ethical, and technical challenges have significantly impeded a meaningful implementation of PHRs among minor patients and dependent adults. Furnishing patients with an updated list of problems, medications, clinic notes, as well as laboratory and diagnostic studies results will undeniably improve transparency and allow patients to become better informed and involved in managing their own health care. However, although most PHRs are personally managed and individually maintained, the PHRs for children and dependent adults are not. Contingent on their developmental maturity or intellectual capacity, these patients require proxies to help access their PHR and manage their health information, and the control of the record may be either shared by both the patient and proxy or solely managed by the proxy. For children and adolescents this proxy role is generally provided to parents who retain this responsibility until the patient reaches legal adulthood (in most states at 18 years of age or emancipation) and is able to fully embrace complete ownership of his or her own health information. For dependent young adults this role is frequently filled by parents or other relatives, whereas for elderly patients this role may be carried out by a spouse, adult children, other relatives, or an unrelated caregiver. The configuration of most currently available PHRs allows both the patient (where appropriate) and his or her designated proxy complete access to the available data contained in the PHR. However, in many circumstances, … Address correspondence to Fabienne C, Bourgeois MD, MPH, Division of General Pediatrics, Boston Children’s Hospital, 300 Longwood Ave, Boston, MA 02115. E-mail: fabienne.bourgeois{at}childrens.harvard.edu