Surveillance of an Online Social Network to Assess Population-level Diabetes Health Status and Healthcare Quality

Objective: Test a novel health monitoring approach by engaging an international online diabetes social network (SN) in consented health surveillance. Methods: Collection of structured self-reports about preventive and self-care practices and health status using a software application (“app”) that supports SN-mediated health research. Comparison of SN measures by diabetes type; and, SN with Behavioral Risk Factor Surveillance System (BRFSS) data, for US-residing insulin dependent respondents, using logistic regression. Results: Of 2,414 SN app users, 82% (n=1979) provided an A1c and 41% (n=996) completed a care survey of which 931 have diabetes. Of these: 65% and 41% were immunized against influenza and pneumonia respectively, 90% had their cholesterol checked, 82% and 66%, had their eyes and feet checked, respectively. Type 1/LADA respondents were more likely than Type 2/pre-diabetic respondents to report all five recommended practices (Adjusted OR (95% CI) 2.2 (1.5, 3.2)). Past year self-care measures were: 58% self-monitored their blood glucose (SMBG) ≥ 5 times daily, 37% saw their diabetes nutritionist, 56% saw a diabetes nurse educator, 53% saw a doctor for their diabetes ≥ 4 times. Reports of health status did not differ by diabetes type in the SN sample. The SN group was more likely than the BRFSS comparator group to use all five preventive care practices (Adjusted OR (95% CI) 1.8 (1.4, 2.1) and SMBG ≥ 5 times daily (Adjusted OR (95% CI) 10.1 (6.8, 14.9). Conclusions: Rapid assessment of diabetes care practices using a novel, SN-mediated approach can extend the capability of standard health surveillance systems

Electronic Patient-Physician Communication: Problems and Promise

A critical mass of Internet users will soon enable wide diffusion of electronic communication within medical practice. E-mail between physicians and patients offers important opportunities for better communication. Linking patients and physicians through e-mail may increase the involvement of patients in supervising and documenting their own health care, processes that may activate patients and contribute to improved health. These new linkages may have profound implications for the patientphysician relationship. Although the federal government proposes regulation of telemedicine technologies and medical software, communications technologies are evolving under less scrutiny. Unless these technologies are implemented with substantial forethought, they may disturb delicate balances in the patient-physician relationship, widen social disparities in health outcomes, and create barriers to access to health care. This paper seeks to identify the promise and pitfalls of electronic patient-pbysician communication before such technology becomes widely distributed. A research agenda is proposed that would provide data that are useful for careful shaping of the communications infrastructure. The paper addresses the need to 1) define appropriate use of the various modes of patient-physician communication, 2) ensure the security and confidentiality of patient information, 3) create user interfaces that guide patients in effective use of the technology, 4) proactively assess medicolegal liability, and 5) ensure access to the technology by a multicultural, multilingual population with varying degrees of literacy.History of Scienc

Willingness to share personal health record data for care improvement and public health: A survey of experienced personal health record users

Background: Data stored in personally controlled health records (PCHRs) may hold value for clinicians and public health entities, if patients and their families will share them. We sought to characterize consumer willingness and unwillingness (reticence) to share PCHR data across health topics, and with different stakeholders, to advance understanding of this issue. Methods: Cross-sectional 2009 Web survey of repeat PCHR users who were patients over 18 years old or parents of patients, to assess willingness to share their PCHR data with an-out-of-hospital provider to support care, and the state/local public health authority to support monitoring; the odds of reticence to share PCHR information about ten exemplary health topics were estimated using a repeated measures approach. Results: Of 261 respondents (56% response rate), more reported they would share all information with the state/local public health authority (63.3%) than with an out-of-hospital provider (54.1%) (OR 1.5, 95% CI 1.1, 1.9; p = .005); few would not share any information with these parties (respectively, 7.9% and 5.2%). For public health sharing, reticence was higher for most topics compared to contagious illness (ORs 4.9 to 1.4, all p-values < .05), and reflected concern about anonymity (47.2%), government insensitivity (41.5%), discrimination (24%). For provider sharing, reticence was higher for all topics compared to contagious illness (ORs 6.3 to 1.5, all p-values < .05), and reflected concern for relevance (52%), disclosure to insurance (47.6%) and/or family (20.5%). Conclusions: Pediatric patients and their families are often willing to share electronic health information to support health improvement, but remain cautious. Robust trust models for PCHR sharing are needed

Development of a Scalable Pharmacogenomic Clinical Decision Support Service

Advances in sequencing technology are making genomic data more accessible within the healthcare environment. Published pharmacogenetic guidelines attempt to provide a clinical context for specific genomic variants; however, the actual implementation to convert genomic data into a clinical report integrated within an electronic medical record system is a major challenge for any hospital. We created a two-part solution that integrates with the medical record system and converts genetic variant results into an interpreted clinical report based on published guidelines. We successfully developed a scalable infrastructure to support TPMT genetic testing and are currently testing approximately two individuals per week in our production version. We plan to release an online variant to clinical interpretation reporting system in order to facilitate translation of pharmacogenetic information into clinical practice

Comparison of Drug Utilization Patterns in Observational Data: Antiepileptic Drugs in Pediatric Patients

Purpose: Physicians require information on the comparative benefits and harms of medications for optimal treatment decisions. However, this type of data is limited, especially for pediatric patients. Objective: Our aim was to use observational data to measure and compare medication utilization patterns in a pediatric patient population. Methods: Using pharmacy claims data from a large, national-scale insurance program in the US, we identified all patients with a diagnosis of epilepsy treated with a first-generation (carabamazepine, ethosuximide, phenobarbital, phenytoin, valproate) or second-generation (carbamazepine XR, gabapentin, lamotrigine, levetiracetam, oxcarbazepine, tiagabine, topiramate, valproate XR, zonisamide) antiepileptic drug. Treatment periods were defined based on prescription fill dates and medication days supplied. Medication use was measured for individual antiepileptic drugs and for first-generation and second-generation drugs as groups. Results: There were 2527 (54%) patients who initiated therapy with first-generation and 2139 (46%) with second-generation antiepileptics. First- and second-generation drugs had the same one-year retention rates (26% [95%CI 24–28] and 26% [95%CI 25–28], respectively). A total of 26% (95%CI 25–28) and 29% (95%CI 27–31) of patients who started on a first- or second-generation antiepileptic medication, respectively, resumed treatment with the initial drug after discontinuation. Overall, 73% (95%CI 71–74) of patients were treated with only one antiepileptic drug, with similar rates for patients started on first- and second-generation drugs (71% [95%CI 69–73] vs 74% [95%CI 72–76]). Conclusions: Comparing drug utilization patterns in a pediatric population using observational data, we found similar rates of retention and therapeutic changes. These findings are consistent with available comparative data and demonstrate an approach that could be extended to other drug classes and conditions in pediatric populations to examine drug effectiveness

Are Meaningful Use Stage 2 certified EHRs ready for interoperability? Findings from the SMART C-CDA Collaborative

Background and objective Upgrades to electronic health record (EHR) systems scheduled to be introduced in the USA in 2014 will advance document interoperability between care providers. Specifically, the second stage of the federal incentive program for EHR adoption, known as Meaningful Use, requires use of the Consolidated Clinical Document Architecture (C-CDA) for document exchange. In an effort to examine and improve C-CDA based exchange, the SMART (Substitutable Medical Applications and Reusable Technology) C-CDA Collaborative brought together a group of certified EHR and other health information technology vendors. Materials and methods We examined the machine-readable content of collected samples for semantic correctness and consistency. This included parsing with the open-source BlueButton.js tool, testing with a validator used in EHR certification, scoring with an automated open-source tool, and manual inspection. We also conducted group and individual review sessions with participating vendors to understand their interpretation of C-CDA specifications and requirements. Results: We contacted 107 health information technology organizations and collected 91 C-CDA sample documents from 21 distinct technologies. Manual and automated document inspection led to 615 observations of errors and data expression variation across represented technologies. Based upon our analysis and vendor discussions, we identified 11 specific areas that represent relevant barriers to the interoperability of C-CDA documents. Conclusions: We identified errors and permissible heterogeneity in C-CDA documents that will limit semantic interoperability. Our findings also point to several practical opportunities to improve C-CDA document quality and exchange in the coming years

An i2b2-based, generalizable, open source, self-scaling chronic disease registry

Objective: Registries are a well-established mechanism for obtaining high quality, disease-specific data, but are often highly project-specific in their design, implementation, and policies for data use. In contrast to the conventional model of centralized data contribution, warehousing, and control, we design a self-scaling registry technology for collaborative data sharing, based upon the widely adopted Integrating Biology & the Bedside (i2b2) data warehousing framework and the Shared Health Research Information Network (SHRINE) peer-to-peer networking software. Materials and methods Focusing our design around creation of a scalable solution for collaboration within multi-site disease registries, we leverage the i2b2 and SHRINE open source software to create a modular, ontology-based, federated infrastructure that provides research investigators full ownership and access to their contributed data while supporting permissioned yet robust data sharing. We accomplish these objectives via web services supporting peer-group overlays, group-aware data aggregation, and administrative functions. Results: The 56-site Childhood Arthritis & Rheumatology Research Alliance (CARRA) Registry and 3-site Harvard Inflammatory Bowel Diseases Longitudinal Data Repository now utilize i2b2 self-scaling registry technology (i2b2-SSR). This platform, extensible to federation of multiple projects within and between research networks, encompasses >6000 subjects at sites throughout the USA. Discussion We utilize the i2b2-SSR platform to minimize technical barriers to collaboration while enabling fine-grained control over data sharing. Conclusions: The implementation of i2b2-SSR for the multi-site, multi-stakeholder CARRA Registry has established a digital infrastructure for community-driven research data sharing in pediatric rheumatology in the USA. We envision i2b2-SSR as a scalable, reusable solution facilitating interdisciplinary research across diseases