Whose Personal Control? Creating Private, Personally Controlled Health Records for Pediatric and Adolescent Patients
- Fabienne C Bourgeoisa,g,
- Patrick L Taylorc,g,
- S Jean Emansd,g,
- Daniel J Nigrine,f,g,h,
- Kenneth D Mandlb,e,f,g,h
- aDivision of General Pediatrics, Children's Hospital Boston, Boston, MA
- bDivision of Emergency Medicine, Children's Hospital Boston, Boston, MA
- cOffice of the General Counsel, Children's Hospital Boston, Boston, MA
- dDivision of Adolescent Medicine, Children's Hospital Boston, Boston, MA
- eInformation Services Department, Children's Hospital Boston, Boston, MA
- fChildren's Hospital Informatics Program, Children's Hospital Boston, Boston, MA
- gDepartment of Pediatrics, Harvard Medical School, Boston, MA
- hCenter for Biomedical Informatics, Harvard Medical School, Boston, MA
- Correspondence: Fabienne C. Bourgeois, MD, MPH, Division of General Pediatrics, Children's Hospital Boston, 300 Longwood Avenue, Boston, MA 02115 (Email: )
- Received 19 May 2008
- Accepted 15 August 2008
Personally controlled health records (PCHRs) enable patients to store, manage, and share their own health data, and promise unprecedented consumer access to medical information. To deploy a PCHR in the pediatric population requires crafting of access and security policies, tailored to a record that is not only under patient control, but one that may also be accessed by parents, guardians, and third-party entities. Such hybrid control of health information requires careful consideration of both the PCHR vendor's access policies, as well as institutional policies regulating data feeds to the PCHR, to ensure that the privacy and confidentiality of each user is preserved. Such policies must ensure compliance with legal mandates to prevent unintended disclosures and must preserve the complex interactions of the patient-provider relationship. Informed by our own operational involvement in the implementation of the Indivo PCHR, we provide a framework for understanding and addressing the challenges posed by child, adolescent, and family access to PCHRs.
This work was supported by R01 CDC 000065-01 and P01 CD000260-01 from the Centers for Disease Control and Prevention, by T32HP10018-12 from the Health Resources and Service Administration, and by Children's Hospital Boston.
Dr. Mandl reports receiving support from the nonprofit Children's Hospital Boston, a pediatric teaching hospital, to provide unrestricted and nonexclusive advice that informs the joint work between Children's Hospital Boston and the nonprofit entity Dossia, as well as other deployments of Indivo—an open-source, freely available PCHR—with respect to success factors for PCHR diffusion and the personal control model of health information. Dossia has a contract with Children's Hospital Boston that supports the use of Indivo by the employees of the Dossia founding companies. The core PCHR software produced under this contract is made freely available as part of the open-source code base of Indivo. No other potential conflict of interest relevant to this article was reported.