Daniel J. Nigrin

The Shared Health Research Information Network (SHRINE): A Prototype Federated Query Tool for Clinical Data Repositories

The authors developed a prototype Shared Health Research Information Network (SHRINE) to identify the technical, regulatory, and political challenges of creating a federated query tool for clinical data repositories. Separate Institutional Review Boards (IRBs) at Harvards three largest affiliated health centers approved use of their data, and the Harvard Medical School IRB approved building a Query Aggregator Interface that can simultaneously send queries to each hospital and display aggregate counts of the number of matching patients. Our experience creating three local repositories using the open source Informatics for Integrating Biology and the Bedside (i2b2) platform can be used as a road map for other institutions. The authors are actively working with the IRBs and regulatory groups to develop procedures that will ultimately allow investigators to obtain identified patient data and biomaterials through SHRINE. This will guide us in creating a future technical architecture that is scalable to a national level, compliant with ethical guidelines, and protective of the interests of the participating hospitals.

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

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 vendors 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.

Temporal Expressiveness in Querying a Time-stamp—based Clinical Database

Most health care databases include time-stamped instant data as the only temporal representation of patient information. Many previous efforts have attempted to provide frameworks in which medical databases could be queried in relation to time. These, however, have required either a sophisticated database representation of time, including time intervals, or a time-stamp-based database coupled with a nonstandard temporal query language. In this work, the authors demonstrate how their previously described data retrieval application, DXtractor, can be used as a database querying application with expressive power close to that of temporal databases and temporal query languages, using only standard SQL and existing time-stamp-based repositories. DXtractor provides the ability to compose temporal queries through an interface that is understood by nonprogramming medical personnel. Not all temporal constructs are easily implemented using this framework; nonetheless, DXtractors temporal capabilities provide a significant improvement in the temporal expressivity accessible to clinicians using standard time-stamped clinical databases.

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

When 'Hacktivists' Target Your Hospital

Earlier this year, Boston Childrens Hospital was targeted in a sustained cyberattack purportedly instigated by the hacker group known as Anonymous — an event that may carry lessons for other health care organizations that now rely heavily on electronic systems.

ATRAS: A database-independent, computer-based retrieval and analysis system for functional adrenal hormone testing. 409

Many endocrinologic diagnoses rest on results of functional tests. Such tests yield large and complex data sets, whose normal values depend on gender, age, developmental stage, and the laboratory in which the tests are performed. The ratios of hormonal values are also computed and compared to accepted normal ratios, which may also vary among institutions. In addition to the intrinsic complexity of this analysis task, automated interpretation of these tests is made substantially more difficult because of the heterogeneity of the databases in which these tests are stored. Functional adrenal hormone testing serves as an archetypal illustration of these points. To facilitate the retrieval and analysis of these data from an institutions electronic medical record system (EMRS), we have developed a computer-based decision-support system called ATRAS (Adrenal Test Retrieval and Analysis System).