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 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.

The effect of an electronic health record-based tool on abnormal pediatric blood pressure recognition.

BACKGROUND: Recognition of high blood pressure (BP) in children is poor, partly due to the need to compute age-sex-height referenced percentiles. This study examined the change in abnormal BP recognition before versus after the introduction of an electronic health record (EHR) app designed to calculate BP percentiles with a training lecture. METHODS AND RESULTS: Clinical data were extracted on all ambulatory, non-urgent encounters for children 3-18 years old seen in primary care, endocrinology, cardiology, or nephrology clinics at an urban, academic hospital in the year before and the year after app introduction. Outpatients with at least 1 BP above the age-gender-height referenced 90th percentile were included. Abnormal BP recognition was defined as a BP related ICD-9 code, referral to nephrology or cardiology, an echocardiogram or renal ultrasound to evaluate BP concern, or a follow-up primary care visit for BP monitoring. Multivariable adjusted logistic regression compared odds of recognition before and after app introduction. Of 78 768 clinical encounters, 3521 had abnormal BP in the pre- and 3358 in the post-app period. App use occurred in 13% of elevated BP visits. Overall, abnormal BP was recognized in 4.9% pre-app period visits and 7.1% of visits post-app (P < .0001). Recognition was significantly higher when the app was actually used (adjusted OR 3.17 95% CI 2.29-4.41, P < .001). Without app use recognition was not different. CONCLUSIONS: BP app advent modestly increased abnormal BP recognition in the entire cohort, but actual app use was associated with significantly higher recognition. Predictors of abnormal BP recognition deserve further scrutiny.

Automated 'pain drawing' analysis by computer-controlled, patient-interactive neurological stimulation system.

We have developed a new method for the collection and analysis of pain drawings, as part of a computer-controlled, patient-interactive system for use with implanted neurological stimulators. The system has been tested in 44 patients with permanently implanted spinal cord stimulators for the relief of chronic, intractable pain. Patients interact directly with the system, using a graphics tablet, to enter pain drawings and corresponding outlines of their perceptions of stimulation paresthesias, for different stimulating pulse parameters and electrode geometries. Image analysis software has been developed to examine these data quantitatively. This precludes the inter-rater inconsistencies reported for manual pain drawing scoring techniques. A highly significant correlation has been observed between patients' analog ratings of the overlap of pain by paresthesias and the results of our automated analysis of graphic data. This in turn has been found to correlate with clinical observations of pain relief. The contemporary implantable stimulation devices supported by our system permit non-invasive selection of stimulating anodes and cathodes from a linear array of 4 electrodes. The 50 possible electrode combinations have certain geometric features, which we have entered into a multivariate statistical analysis, to determine their relationship with the overlap of pain by paresthesias. One particular configuration (cathode(s) flanked by anode(s) above and below) is significantly better, by this measure, than all the alternatives. This is consistent with prior clinical observations that this configuration is favored by patients whose systems have been adjusted by conventional, manual methods. Pain drawing' entry and analysis by a computerized, patient-interactive system has been useful in this specialized setting and may have broader applications.

Effect of a pediatric hospitalist system on housestaff education and experience.

OBJECTIVE: To determine the effect of a pediatric hospitalist system on housestaff education and experience. SETTING: Free-standing academic children's hospital. Hospitalists were introduced in June 24, 1998, to supervise teaching and care on the general pediatric wards. METHODS: On 2 surveys, housestaff rated their skills, knowledge, and experiences on the wards (experiences survey), and the quality of teaching and supervision by attending physicians (attending survey). Responses before and after the introduction of the hospitalist system were compared using Wilcoxon nonparametric tests. RESULTS: Seventy-six (70%) of the 109 interns and 54 (62%) of the 87 senior residents responded to the experiences survey. Following introduction of the hospitalist system, the interns' mean overall rating of the general pediatrics wards rose from 4.1 to 4.7 on a 5-point Likert scale (P =.01). Their ratings of comparison rotations did not change significantly. Interns' satisfaction with the educational experience (3.2 to 3.5 of a 4-point Likert scale, P<.05), supervision, and quality of life on the pediatrics wards also improved significantly, as did their self-assessments of skills and knowledge related to general pediatrics training. Senior residents' ratings were generally unchanged. Three hundred seventy-one (63%) of the 593 attending physicians' surveys were completed. Compared with nonhospitalist attendings, hospitalists were rated more effective role models (4.7 vs 4.5 points, P<.05) and teachers (4.7 vs 4.4 points, P<.01). They were rated more knowledgeable (4.8 vs 4.5 of 5, P<.001) and accessible (4.7 vs 4.5 points, P<.05), involved housestaff more in the learning process (4.7 vs 4.4 points, P<.05), and gave better feedback (4.5 vs 4.2 points, P<.01). Hospitalists' bedside teaching, however, was rated lower (3.7 vs 4.2 points, P<.001). CONCLUSIONS: Overall, hospitalists were rated significantly higher as educators than were traditional attending physicians. Introduction of a hospitalist system was associated with improved intern experience and quality of life on general pediatrics wards, and with improved self-reported skills and knowledge in general pediatrics.

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 Harvard's 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.

Mychildren's: integration of a personally controlled health record with a tethered patient portal for a pediatric and adolescent population.

Personally controlled health records (PCHRs) and patient portals are increasingly being offered by healthcare institutions, employers, insurance companies and commercial entities to allow patients access to their health information. Both applications offer unique services to provide patients with tools to manage their health. While PCHRs allow users ubiquitous, portable, patient controlled access to their health information, traditional patient portals provide provider-tethered applications allowing patients access, but not control of, certain healthcare information, as well as communication and administrative functions, such as secure messaging, appointment management and prescription refill requests, facilitating care at a specific healthcare facility.We describe our approach for the design, content creation, policy development, and implementation of MyChildren's, a unique web-based application leveraging the advantages of both a provider-tethered patient portal and a PCHR to allow patients and their guardians access to the functionality and convenience of a traditional patient portal, as well as the portability and flexibility of a PCHR.

Characteristics at diagnosis of type 1 diabetes in children younger than 6 years.

OBJECTIVE: To characterize the prodrome, presentation, family history, and biochemical status at diagnosis of type 1 diabetes mellitus (T1D) in children under age 6 years. STUDY DESIGN: This was a retrospective chart review of patients hospitalized at diagnosis with T1D from 1990 to 1999 in a children's hospital. RESULTS: A total of 247 children were hospitalized, 44% of whom presented in diabetic ketoacidosis (DKA). When stratified by 2-year age intervals, only total carbon dioxide (tCO(2)) was significantly lower in the youngest children (P = .02), and the duration of candidiasis was significantly longer in those children presenting in DKA (P = .004). Parents were more likely to recognize symptomatic hyperglycemia in children older than 2 years (P < .0001). Most parents sought care for their child suspecting that the child had diabetes; the other children were diagnosed when presenting with another concern. Only gender and tCO(2) were significantly correlated with hemoglobin A1c (HbA1c); age-adjusted HbA1c was 0.64% higher in girls compared with boys (P = .045), and each 1-mmol/L decrement in tCO(2) increased the age- and gender-adjusted HbA1c by 0.086% (P < .001). CONCLUSIONS: A high proportion of children under age 6 years present critically ill at the diagnosis of T1D. When any of the classic symptoms of diabetes or a yeast infection is present, a serum glucose level should be measured.