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Whose Personal Control? Creating Private, Personally Controlled Health Records for Pediatric and Adolescent Patients

Overview
Journal J Am Med Inform Assoc
Publisher Oxford University Press
Specialty Medical Informatics
Date 2008 Aug 30
PMID 18755989
Citations 35
Authors
Fabienne C Bourgeois
Patrick L Taylor
S Jean Emans
Daniel J Nigrin
Kenneth D Mandl
Affiliations
Soon will be listed here.
Abstract

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.

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References
1.
. Leavitt lays the groundwork for NHIN standards. HHS touts public-private collaboration for HIT interoperability. Med Health. 2005; 59(20):4. View
2.
Feied C, Handler J, Smith M, Gillam M, Kanhouwa M, Rothenhaus T . Clinical information systems: instant ubiquitous clinical data for error reduction and improved clinical outcomes. Acad Emerg Med. 2004; 11(11):1162-9. DOI: 10.1197/j.aem.2004.08.010. View
3.
Simons W, Mandl K, Kohane I . The PING personally controlled electronic medical record system: technical architecture. J Am Med Inform Assoc. 2004; 12(1):47-54. PMC: 543826. DOI: 10.1197/jamia.M1592. View
4.
van Straaten J . The minor's limited right to confidential health care and the inverse of confidentiality: a parent's decision not to disclose illness status to a minor child. Child Leg Rights J. 2006; 20(1):46-54. View
5.
Weingart S, Rind D, Tofias Z, Sands D . Who uses the patient internet portal? The PatientSite experience. J Am Med Inform Assoc. 2005; 13(1):91-5. PMC: 1380201. DOI: 10.1197/jamia.M1833. View