Publications

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Soprano, Fleisher, Mandl. The spontaneous passage of esophageal coins in children. Arch Pediatr Adolesc Med. 1999;153:1073–6.
OBJECTIVES: To determine the likelihood of spontaneous passage of esophageal coins to the stomach in children and to determine the effect of initial coin location on spontaneous passage. DESIGN: Retrospective review of medical records and radiographs. SUBJECTS: Consecutive patients 18 years or younger presenting during a 24-month period (October 1995 to September 1997) whose evaluation revealed an esophageal coin. SETTING: The emergency department of a large, urban academic children's hospital. MAIN OUTCOME MEASURES: Independent measures were time between ingestion and radiographs, initial location of the coin, and categorization of case as "simple" (patients without a history of esophageal disease or surgery, with a single esophageal coin lodged less than 24 hours, and with no respiratory compromise on presentation) or "complex." Dependent measures were spontaneous passage of the coin to the stomach and the time to passage. RESULTS: A total of 116 cases were included in the analysis, of which 84 were simple and 32 complex. Among the 84 simple cases, the coin was initially located in the proximal third of the esophagus in 54 (64%), the middle third in 7 (8%), and the distal third in 22 (26%). For the 32 complex cases, the initial location of the coin was the proximal third of the esophagus in 27 (84%) and the middle third in 5 (16%). Subsequent radiographs were obtained in the emergency department in 58 (69%) of the simple cases. Among these cases, spontaneous passage of the coin to the stomach occurred in 16 (28% [95% confidence interval, 21%-41%]). By initial coin location, spontaneous passage in this group occurred in 22% (7/32) of proximal, 33% (2/6) of middle, and 37% (7/19) of distal esophageal coins (P >.05). Subsequent radiographs were obtained in 14 (44%) of the complex cases; no coin had passed spontaneously to the stomach in these patients (0% [95% confidence interval, 0%-20%]). CONCLUSIONS: Children with a single esophageal coin seen within 24 hours of ingestion, who have no history of esophageal disease and no respiratory compromise on presentation, have a 28% chance of spontaneous passage of the coin to the stomach. Coins in the upper as well as the lower esophagus pass spontaneously. Observing these children for 12 to 24 hours prior to invasive procedures will reduce complications and costs.
Mandl, Mandel, Murphy, Bernstam, Ramoni, Kreda, McCoy, Adida, Kohane. The SMART Platform: early experience enabling substitutable applications for electronic health records. J Am Med Inform Assoc. 2012;19:597–603.
OBJECTIVE: The Substitutable Medical Applications, Reusable Technologies (SMART) Platforms project seeks to develop a health information technology platform with substitutable applications (apps) constructed around core services. The authors believe this is a promising approach to driving down healthcare costs, supporting standards evolution, accommodating differences in care workflow, fostering competition in the market, and accelerating innovation. MATERIALS AND METHODS: The Office of the National Coordinator for Health Information Technology, through the Strategic Health IT Advanced Research Projects (SHARP) Program, funds the project. The SMART team has focused on enabling the property of substitutability through an app programming interface leveraging web standards, presenting predictable data payloads, and abstracting away many details of enterprise health information technology systems. Containers--health information technology systems, such as electronic health records (EHR), personally controlled health records, and health information exchanges that use the SMART app programming interface or a portion of it--marshal data sources and present data simply, reliably, and consistently to apps. RESULTS: The SMART team has completed the first phase of the project (a) defining an app programming interface, (b) developing containers, and (c) producing a set of charter apps that showcase the system capabilities. A focal point of this phase was the SMART Apps Challenge, publicized by the White House, using http://www.challenge.gov website, and generating 15 app submissions with diverse functionality. CONCLUSION: Key strategic decisions must be made about the most effective market for further disseminating SMART: existing market-leading EHR vendors, new entrants into the EHR market, or other stakeholders such as health information exchanges.
STUDY OBJECTIVE: Data used by syndromic surveillance systems must be grouped into syndromes or prodromes. Previous studies have examined the accuracy of different methods of syndromic grouping. We seek to study the effects of different syndrome grouping methods on model accuracy, a key factor in the outbreak-detection performance of syndromic surveillance systems. METHODS: Daily emergency department visit rates were analyzed from 2 urban academic tertiary care hospitals for 1,680 consecutive days. During this period, each hospital census totaled approximately 230,000 patient visits. Three methods were used to group the visits into a respiratory-related syndrome category: 1 relying on chief complaint, 1 on diagnostic codes, and 1 on a combination of the two. The different groupings of the syndromic data resulting from these methods were used to build different historical models that were then tested for forecasting accuracy and for sensitivity to detecting simulated outbreaks. RESULTS: For both hospitals, the data grouped according to chief complaints alone yielded the lowest model accuracy and the lowest detection sensitivity. Using diagnostic codes to group the data yielded better results in accuracy and sensitivity. Combining the 2 grouping methods yielded the best results in accuracy and sensitivity. Temporal smoothing of the data was shown to improve sensitivity in all cases, although to various degrees in the different models. CONCLUSION: The methods used to group input data into syndromic categories can have substantial effects on the overall performance of syndromic surveillance systems. The results suggest that incorporating diagnostic data into these systems can improve the modeling accuracy and its detection sensitivity. Furthermore, the best results may be achieved by using a combination of methods to group visits into syndromic categories.
Jonikas, Mandl. Surveillance of medication use: early identification of poor adherence. J Am Med Inform Assoc. 2012;19:649–54.
BACKGROUND: We sought to measure population-level adherence to antihyperlipidemics, antihypertensives, and oral hypoglycemics, and to develop a model for early identification of subjects at high risk of long-term poor adherence. METHODS: Prescription-filling data for 2 million subjects derived from a payor's insurance claims were used to evaluate adherence to three chronic drugs over 1 year. We relied on patterns of prescription fills, including the length of gaps in medication possession, to measure adherence among subjects and to build models for predicting poor long-term adherence. RESULTS: All prescription fills for a specific drug were sequenced chronologically into drug eras. 61.3% to 66.5% of the prescription patterns contained medication gaps >30 days during the first year of drug use. These interrupted drug eras include long-term discontinuations, where the subject never again filled a prescription for any drug in that category in the dataset, which represent 23.7% to 29.1% of all drug eras. Among the prescription-filling patterns without large medication gaps, 0.8% to 1.3% exhibited long-term poor adherence. Our models identified these subjects as early as 60 days after the first prescription fill, with an area under the curve (AUC) of 0.81. Model performance improved as the predictions were made at later time-points, with AUC values increasing to 0.93 at the 120-day time-point. CONCLUSIONS: Dispensed medication histories (widely available in real time) are useful for alerting providers about poorly adherent patients and those who will be non-adherent several months later. Efforts to use these data in point of care and decision support facilitating patient are warranted.
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.
INTRODUCTION: The distribution and types of Internet connectivity will determine the equity of access by patient populations to emerging health technologies. We sought to measure the rates, types, and predictors of access in a patient population targeted for Web-based medical services. METHODS: Design. Cross sectional in-person interview. Setting. Emergency department of a large urban pediatric teaching hospital. Subjects. Primary caretakers of patients or patients at least 16 years old. Procedure and measures. Subjects were asked about access to e-mail and the Internet as well as about willingness to use and concerns about Web-based services. Views of equity and access and sociodemographic data were also elicited. RESULTS: 132 subjects were enrolled in the study. Of respondents, 67.2% use a computer and 36.4% can access the Internet or e-mail from home. Including Internet connections and/or e-mail accounts at work, school and public libraries, 50.7% of the sample has access. Forty percent of families have e-mail accounts. The rate at which families have connectivity is primarily correlated with income (r = 0.6, p 0.01). At all income levels, rates of access to the World Wide Web are higher than to e-mail. White patients are much more likely to have e-mail (OR 5.0, 95% CI 2.4-10.8) and Web access (OR 3.6, 95% CI 1.7-7.5). CONCLUSIONS: Connectivity is directly correlated with income and distributed unevenly across racial and ethnic groups. World Wide Web access is more prevalent than e-mail accounts, and both are often obtained outside the home. Design of health applications should account for these attributes of patient access.
Weitzman, Cole, Kaci, Mandl. Social but safe? Quality and safety of diabetes-related online social networks. J Am Med Inform Assoc. 2011;18:292–7.
OBJECTIVE: To foster informed decision-making about health social networking (SN) by patients and clinicians, the authors evaluated the quality/safety of SN sites' policies and practices. DESIGN: Multisite structured observation of diabetes-focused SN sites. Measurements 28 indicators of quality and safety covering: (1) alignment of content with diabetes science and clinical practice recommendations; (2) safety practices for auditing content, supporting transparency and moderation; (3) accessibility of privacy policies and the communication and control of privacy risks; and (4) centralized sharing of member data and member control over sharing. RESULTS: Quality was variable across n=10 sites: 50% were aligned with diabetes science/clinical practice recommendations with gaps in medical disclaimer use (30% have) and specification of relevant glycosylated hemoglobin levels (0% have). Safety was mixed with gaps in external review approaches (20% used audits and association links) and internal review approaches (70% use moderation). Internal safety review offers limited protection: misinformation about a diabetes 'cure' was found on four moderated sites. Of nine sites with advertising, transparency was missing on five; ads for unfounded 'cures' were present on three. Technological safety was poor with almost no use of procedures for secure data storage and transmission; only three sites support member controls over personal information. Privacy policies' poor readability impedes risk communication. Only three sites (30%) demonstrated better practice. Limitations English-language diabetes sites only. CONCLUSION: The quality/safety of diabetes SN is variable. Observed better practice suggests improvement is feasible. Mechanisms for improvement are recommended that engage key stakeholders to balance autonomy, community ownership, conditions for innovation, and consumer protection.
Kleinman, Abrams, Mandl, Platt. Simulation for assessing statistical methods of biologic terrorism surveillance. MMWR Morb Mortal Wkly Rep. 2005;54 Suppl:101–8.
INTRODUCTION: Multiple systems have been developed that use surveillance of health-care encounters to provide early warning of a terrorist attack. Limited practical experience and the absence of adequate theoretical assessments have precluded determining which alarm-generating algorithms should be preferred. In the absence of practical and theoretical results, choosing a particular statistical algorithm can be difficult. One way to evaluate algorithms is through simulation. OBJECTIVES: This report describes conceptual features of an example simulation based on the dispersal of anthrax spores and presents results based on the example simulation. METHODS: A simulation was implemented based on the dispersal of anthrax spores from a crop-dusting plane. Simulated cases were then included into an observed data stream. Detection approaches included SaTScan trade mark and small area regression and testing (SMART) scores. An evaluation metric was developed for comparison of results. In addition, a simulation of a separate data stream was added; and then separate and combined surveillance data were compared. RESULTS: In the simulation in which a single data stream was used, the two statistical approaches were substantially similar in performance. The combined surveillance based on two data streams is superior to surveillance based on either stream separately. CONCLUSION: The other potential uses of such a system are considered. These uses include the comparison of different data sources (e.g., outpatient versus emergency department and evaluating the impact of potential changes to the surveillance system, and increasing the population under surveillance). Simulation is a valuable technique for evaluating and planning for syndromic surveillance.
Weitzman, Kaci, Mandl. Sharing medical data for health research: the early personal health record experience. J Med Internet Res. 2010;12:e14.
BACKGROUND: Engaging consumers in sharing information from personally controlled health records (PCHRs) for health research may promote goals of improving care and advancing public health consistent with the federal Health Information Technology for Economic and Clinical Health (HITECH) Act. Understanding consumer willingness to share data is critical to advancing this model. OBJECTIVE: The objective was to characterize consumer willingness to share PCHR data for health research and the conditions and contexts bearing on willingness to share. METHODS: A mixed method approach integrating survey and narrative data was used. Survey data were collected about attitudes toward sharing PCHR information for health research from early adopters (n = 151) of a live PCHR populated with medical records and self-reported behavioral and social data. Data were analyzed using descriptive statistics and logistic regression to characterize willingness, conditions for sharing, and variations by sociodemographic factors. Narrative data were collected through semistructured focus group and one-on-one interviews with a separate sample of community members (n = 30) following exposure to PCHR demonstrations. Two independent analysts coded narrative data for major and minor themes using a shared rubric of a priori defined codes and an iterative inductive process. Findings were triangulated with survey results to identify patterns. RESULTS: Of PHCR users, 138 out of 151 (91%) were willing to share medical information for health research with 89 (59%) favoring an opt-in sharing model. Willingness to share was conditioned by anonymity, research use, engagement with a trusted intermediary, transparency around PCHR access and use, and payment. Consumer-determined restrictions on content and timing of sharing may be prerequisites to sharing. Select differences in support for sharing under different conditions were observed across social groups. No gender differences were observed; however differences in age, role, and self-rated health were found. For example, students were more likely than nonstudents to favor an opt-out sharing default (unadjusted odds ratio [OR] = 2.89, 95% confidence interval [CI] 1.10 - 7.62, P = .03). Participants over age 50 were less likely than younger participants to report that payment would increase willingness to share (unadjusted OR = 0.94, 95% CI 0.91 - 0.96, P .001). Students were more likely than nonstudents to report that payment would increase their willingness to share (unadjusted OR 9.62, 95% CI 3.44 - 26.87, P .001). Experiencing a public health emergency may increase willingness to share especially among persons over 50 (unadjusted OR 1.03, 95% CI 1.01 - 1.05, P = .02); however, students were less likely than non-students to report this attitude (unadjusted OR 0.13, 95% CI 0.05 - 0.36, P .001). Finally, subjects with fair or poor self-rated health were less likely than those with good to excellent self-rated health to report that willingness to share would increase during a public health emergency (unadjusted OR 0.61, 95% CI 0.38 - 0.97, P = .04). CONCLUSIONS: Strong support for sharing of PCHR information for health research existed among early adopters and focus group participants, with support varying by social group under different conditions and contexts. Allowing users to select their preferred conditions for sharing may be vital to supporting sharing and fostering trust as may be development of safety monitoring mechanisms.