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Weitzman, Kaci, Quinn, Mandl. Helping high-risk youth move through high-risk periods: personally controlled health records for improving social and health care transitions. J Diabetes Sci Technol. 2011;5:47–54.
BACKGROUND: New patient-centered information technologies are needed to address risks associated with health care transitions for adolescents and young adults with diabetes, including systems that support individual and structural impediments to self- and clinical-care. METHODS: We describe the personally controlled health record (PCHR) system platform and its key structural capabilities and assess its alignment with tenets of the chronic care model (CCM) and the social-behavioral and health care ecologies within which adolescents and young adults with diabetes mature. RESULTS: Configured as Web-based platforms, PCHRs can support a new class of patient-facing applications that serve as monitoring and support systems for adolescents navigating complex social, developmental, and health care transitions. The approach can enable supportive interventions tailored to individual patient needs to boost adherence, self-management, and monitoring. CONCLUSIONS: The PCHR platform is a paradigm shift for the organization of health information systems and is consistent with the CCM and conceptualizations of patient- and family-centered care for diabetes. Advancing the approach augers well for improvement around health care transitions for youth and also requires that we address (i) structural barriers impacting diabetes care for maturing youth; (ii) challenges around health and technology literacy; (iii) privacy and confidentiality issues, including sharing of health information within family and institutional systems; and (iv) needs for evaluation around uptake, impacts, and outcomes.
Freifeld, Mandl, Reis, Brownstein. HealthMap: global infectious disease monitoring through automated classification and visualization of Internet media reports. J Am Med Inform Assoc. 2008;15:150–7.
OBJECTIVE: Unstructured electronic information sources, such as news reports, are proving to be valuable inputs for public health surveillance. However, staying abreast of current disease outbreaks requires scouring a continually growing number of disparate news sources and alert services, resulting in information overload. Our objective is to address this challenge through the HealthMap.org Web application, an automated system for querying, filtering, integrating and visualizing unstructured reports on disease outbreaks. DESIGN: This report describes the design principles, software architecture and implementation of HealthMap and discusses key challenges and future plans. MEASUREMENTS: We describe the process by which HealthMap collects and integrates outbreak data from a variety of sources, including news media (e.g., Google News), expert-curated accounts (e.g., ProMED Mail), and validated official alerts. Through the use of text processing algorithms, the system classifies alerts by location and disease and then overlays them on an interactive geographic map. We measure the accuracy of the classification algorithms based on the level of human curation necessary to correct misclassifications, and examine geographic coverage. RESULTS: As part of the evaluation of the system, we analyzed 778 reports with HealthMap, representing 87 disease categories and 89 countries. The automated classifier performed with 84% accuracy, demonstrating significant usefulness in managing the large volume of information processed by the system. Accuracy for ProMED alerts is 91% compared to Google News reports at 81%, as ProMED messages follow a more regular structure. CONCLUSION: HealthMap is a useful free and open resource employing text-processing algorithms to identify important disease outbreak information through a user-friendly interface.
Mandl, Kohane. Healthconnect: clinical grade patient-physician communication. Proc AMIA Symp. 1999:849–53.
A critical mass of Internet users is leading to a wide diffusion of electronic communications within medical practice. Unless implemented with substantial forethought, these new technological linkages could disturb delicate balances in the doctor-patient relationship, threaten the privacy of medical information, widen social disparity in health outcomes, and even function as barriers to access. The American Medical Informatics Association (AMIA) recently published recommendations to guide computer-based communications between clinicians and patients. This paper describes the motivations for and the design of HealthConnect, a web-based patient-doctor communications tool currently in use at Children's Hospital, Boston. Structural and process-oriented features of HealthConnect, as they relate to promotion of adherence with the Guidelines, are discussed.
Berry J, Goldmann, Mandl, Putney, Helm, O’Brien, Antonelli, Weinick. Health information management and perceptions of the quality of care for children with tracheotomy: a qualitative study. BMC Health Serv Res. 2011;11:117.
BACKGROUND: Children with tracheotomy receive health care from an array of providers within various hospital and community health system sectors. Previous studies have highlighted substandard health information exchange between families and these sectors. The aim of this study was to investigate the perceptions and experiences of parents and providers with regard to health information management, care plan development and coordination for children with tracheotomy, and strategies to improve health information management for these children. METHODS: Individual and group interviews were performed with eight parents and fifteen healthcare (primary and specialty care, nursing, therapist, equipment) providers of children with tracheotomy. The primary tracheotomy-associated diagnoses for the children were neuromuscular impairment (n = 3), airway anomaly (n = 2) and chronic lung disease (n = 3). Two independent reviewers conducted deep reading and line-by-line coding of all transcribed interviews to discover themes associated with the objectives. RESULTS: Children with tracheotomy in this study had healthcare providers with poorly defined roles and responsibilities who did not actively communicate with one another. Providers were often unsure where to find documentation relating to a child's tracheotomy equipment settings and home nursing orders, and perceived that these situations contributed to medical errors and delayed equipment needs. Parents created a home record that was shared with multiple providers to track the care that their children received but many considered this a burden better suited to providers. Providers benefited from the parent records, but questioned their accuracy regarding critical tracheotomy care plan information such as ventilator settings. Parents and providers endorsed potential improvement in this environment such as a comprehensive internet-based health record that could be shared among parents and providers, and between various clinical sites. CONCLUSIONS: Participants described disorganized tracheotomy care and health information mismanagement that could help guide future investigations into the impact of improved health information systems for children with tracheotomy. Strategies with the potential to improve tracheotomy care delivery could include defined roles and responsibilities for tracheotomy providers, and improved organization and parent support for maintenance of home-based tracheotomy records with web-based software applications, personal health record platforms and health record data authentication techniques.

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Mandl, Feit, Pena, Kohane. Growth and determinants of access in patient e-mail and Internet use. Arch Pediatr Adolesc Med. 2000;154:508–11.
OBJECTIVES: To measure the rate of access to and use of the Internet and e-mail, to determine sociodemographic predictors of access, and to measure the change in Internet and e-mail access over a 1-year interval. DESIGN: Survey study. Comparison of data with those from a similar survey from 1998. SETTING: Emergency department of a large urban pediatric teaching hospital. PARTICIPANTS: Primary caretakers of pediatric patients or the patients themselves if aged 16 years or older. MAIN OUTCOME MEASURES: Use of and access to the Internet or e-mail. RESULTS: We surveyed 214 individuals: 72.8% use or have access to the Internet, e-mail, or both, an increase from 52.2% in the 1998 survey (P.001), and 48.5% regularly use the Internet or e-mail, compared with 43.1% in 1998 (P = .32). Outside the home, access is primarily at work (52.2%), schools (8.9%), public libraries (11.5%), and friends' and relatives' houses (16.7%). Internet use and access are linearly correlated with income (r = 0.43; P.001). White patients are more likely to have access (odds ratio, 2.6; 95% confidence interval, 1.3-5.4; P.001) than black or Asian patients, whereas those of Hispanic ethnicity are less likely to have access (odds ratio, 0.20; 95% confidence interval, 0.09-0.43; P.001). However, after adjustment for race and Hispanic ethnicity, only income was a significant predictor of family access to the Internet and e-mail. CONCLUSIONS: During the past year, many patients have gained access to the Internet and e-mail, although rates of regular use have remained steady. This access is often from outside the home. Furthermore, access is directly related to income and is unevenly distributed across racial and ethnic groups.

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Soprano, Mandl. Four strategies for the management of esophageal coins in children. Pediatrics. 2000;105:e5.
OBJECTIVE: To compare clinical outcomes and costs under 4 strategies for the management of esophageal coins in children. METHODS: We developed a decision analysis model of 4 possible strategies for managing esophageal coins: 1) endoscopic removal under general anesthesia; 2) esophageal bougienage, 3) an outpatient 12- to 24-hour observation period to allow spontaneous coin passage; and 4) an inpatient observation period. Probabilities of success and complication rates for endoscopy and esophageal bougienage were obtained from published data. The probability of spontaneous coin passage was derived from chart review data at our institution. Costs were calculated from charges using a cost-to-charge ratio of.72. Hypothetical patients included in the model were those with a single esophageal coin presenting within 24 hours of ingestion, with no respiratory compromise on presentation and with no previous history of esophageal disease. Strategy-specific outcomes were overall complication rate and total cost in dollars per patient. Sensitivity analyses were performed to account for variations in the data. RESULTS: The esophageal bougienage strategy resulted in no complications and a total cost per patient of $382, which represents a marginal advantage of $2915 per patient compared with the endoscopic removal strategy. On sensitivity analysis over the range of success and complication rates of bougienage, this strategy maintained a considerable decrease in both overall complications and total cost per patient compared with all other strategies. Both outpatient and inpatient observation strategies had overall complication rates of 4.2% compared with the complication rate of 5.8% for the endoscopy strategy. The total cost per patient under these strategies was $2439 for the outpatient and $3141 for the inpatient strategy, representing a marginal advantage of $858 and $156 per patient, respectively, compared with the endoscopy strategy. Both observation strategies maintained a lower overall complication rate compared with endoscopy in the sensitivity analysis. The outpatient observation strategy maintained a marginal advantage of $645 to $1257 per patient compared with endoscopy; however, the inpatient observation strategy total cost per patient surpassed that of endoscopy at a spontaneous passage rate 23%. CONCLUSIONS: Given the high success and low complication rates reported for esophageal bougienage, substantial savings in overall complications and costs would be expected with the use of this procedure. With spontaneous passage rates >23%, either an outpatient or an inpatient observation strategy would reduce costs and complications, compared with endoscopic removal of all esophageal coins.
Fine, Forbes, Osganian, Goldmann, Mandl. Feasibility of leveraging electronic data from pediatric hospitals for national surveillance: a survey of chief information officers. AMIA Annu Symp Proc. 2005:954.
Public health informaticians are evaluating new data sources to optimize real-time surveillance for detecting disease outbreaks. Pediatric populations are often overlooked, but may provide important signals for many reportable and vaccine preventable diseases, as well as emerging infections. The ability of pediatric hospitals to contribute timely information to the identification of disease outbreaks has not been rigorously evaluated. We sought to determine the feasibility of leveraging data from pediatric hospitals to support national disease surveillance, by measuring: 1) the types of pediatric hospital records currently stored in electronic form and accessible to query; 2) the current automated reporting capabilities of pediatric hospitals; and 3) the attitudes of Chief Information Officers (CIOs) towards disease surveillance.
Wang, Ramoni, Mandl, Sebastiani. Factors affecting automated syndromic surveillance. Artif Intell Med. 2005;34:269–78.
OBJECTIVE: The increased threat of bioterroristic attacks and epidemic events requires the development of accurate and timely outbreak detection systems for early identification of anomalies in public health data. MATERIAL AND METHODS: We propose an automated outbreak detection system based on syndromic data. This system uses an autoregressive model with seasonal components to monitor, online, the daily counts of chief complaints for respiratory syndromes at the emergency department of two major metropolitan hospitals. We evaluate this system by estimating the false positive rate in real data under the assumption that there were no outbreaks of disease, and the true positive rate in real baseline data in which we injected stochastically simulated outbreaks of different shape and size. We then use directed graphical models to account for the effect of exogenous factors on the detection performance of the system. RESULTS: Our study shows that for a week-long outbreak, our model has an overall 84.8% true detection accuracy across all shapes of outbreaks, while the outbreak size influences the earliness to detection. The false and true positive rates are also associated with the exogenous factors and knowledge about these factors can help to improve the detection accuracy. CONCLUSION: This study suggests that the integration of multiple data sources can significantly improve the detection accuracy of syndromic surveillance systems.