The Substitutable Medical Apps, Reusable Technologies (SMART) project provides a framework of core services to facilitate the use of substitutable health-related web applications. The platform offers a common interface used to “SMART-ready” health IT systems allowing any SMART application to be able to interact with those systems. At Partners Healthcare, we have SMART-enabled the Informatics for Integrating Biology and the Bedside (i2b2) open source analytical platform, enabling the use of SMART applications directly within the i2b2 web client. In i2b2, viewing the patient in an EMR-like view enables a natural-feeling medical review process for each patient.

This study aimed to comprehensively describe prevalence and temporal dispensing patterns for medications prescribed to children and adolescents in the United States. Participants were 1.6 million children (49% female) under 18 years old enrolled in a nation-wide, employer-provided insurance plan. All medication claims from 1999–2006 were reviewed retrospectively. Drugs were assigned to 16 broad therapeutic categories. Effects of trend over time, seasonality, age and gender on overall and within category prevalence were examined. Results: Mean monthly prevalence for dispensed medications was 23.5% (range 19.4–27.5), with highest rates in winter and lowest in July. The age group with the highest prevalence was one-year-old children. On average each month, 17.1% of all children were dispensed a single drug and 6.4% were dispensed two or more. Over time, prevalence for two or more drugs did not change, but the proportion of children dispensed a single drug decreased (slope -.02%, p = .001). Overall, boys had higher monthly rates than girls (average difference 0.9%, p = .002). However, differences by gender were greatest during middle childhood, especially for respiratory and central nervous system agents. Contraceptives accounted for a large proportion of dispensed medication to older teenage girls. Rates for the drugs with the highest prevalence in this study were moderately correlated (average Pearson r.66) with those from a previously published national survey. Conclusion: On average, nearly one quarter of a population of insured children in the United States was dispensed medication each month. This rate decreased somewhat over time, primarily because proportionally fewer children were dispensed a single medication. The rate for two or more drugs dispensed simultaneously remained steady.

OBJECTIVE

We measured the relative impact of influenza and respiratory syncytial virus (RSV) infections in young children in terms of emergency department (ED) visits, clinical care requirements, and overall resource use.

METHODS

Patients who were aged ≤7 years and treated in the ED of a tertiary care pediatric hospital for an acute respiratory infection were enrolled during 2 winter seasons between 2003 and 2005. We quantified health care resource use for children with influenza or RSV infections, and extrapolated results to estimate the national resource use associated with influenza and RSV infections.

RESULTS

Nationally, an estimated 10.2 ED visits per 1000 children were attributable to influenza and 21.5 visits per 1000 to RSV. Children who were aged 0 to 23 months and infected with RSV had the highest rate of ED visits with 64.4 visits per 1000 children. Significantly more children required hospitalization as a result of an RSV infection compared with influenza, with national hospitalization rates of 8.5 and 1.4 per 1000 children, respectively. The total number of workdays missed yearly by caregivers of children who required ED care was 246 965 days for influenza infections and 716 404 days for RSV infections.

CONCLUSION

For young children, RSV is associated with higher rates of ED visits, hospitalization, and caregiver resource use than is influenza. Our results provide data on the large number of children who receive outpatient care for influenza and RSV illnesses and serve to inform analyses of prevention programs and treatments for both influenza and RSV disease.

Background

Clinical trial registries are in widespread use to promote transparency around trials and their results.

Objective

To describe characteristics of drug trials listed in ClinicalTrials.gov and examine whether the funding source of these trials is associated with favorable published outcomes.

Design

An observational study of safety and efficacy trials for anticholesteremics, antidepressants, antipsychotics, proton-pump inhibitors, and vasodilators conducted between 2000 and 2006.

Setting

ClinicalTrials.gov, a Web-based registry of clinical trials launched in 1999.

Measurements

Publications resulting from the trials for the 5 drug categories of interest were identified, and data were abstracted on the trial record and publication, including timing of registration, elements of the study design, funding source, publication date, and study outcomes. Assessments were based on the primary funding categories of industry, government agencies, and nonprofit or nonfederal organizations.

Results

Among 546 drug trials, 346 (63%) were primarily funded by industry, 74 (14%) by government sources, and 126 (23%) by nonprofit or nonfederal organizations. Trials funded by industry were more likely to be phase 3 or 4 trials (88.7%; P < 0.001 across groups), to use an active comparator in controlled trials (36.8%; P = 0.010 across groups), to be multicenter (89.0%; P < 0.001 across groups), and to enroll more participants (median sample size, 306 participants; P < 0.001 across groups). Overall, 362 (66.3%) trials had published results. Industry-funded trials reported positive outcomes in 85.4% of publications, compared with 50.0% for government-funded trials and 71.9% for nonprofit or nonfederal organization–funded trials (P < 0.001). Trials funded by nonprofit or nonfederal sources with industry contributions were also more likely to report positive outcomes than those without industry funding (85.0% vs. 61.2%; P = 0.013). Rates of trial publication within 24 months of study completion ranged from 32.4% among industry-funded trials to 56.2% among nonprofit or nonfederal organization–funded trials without industry contributions (P = 0.005 across groups).

Limitations

The publication status of a trial could not always be confirmed, which could result in misclassification. Additional information on study protocols and comprehensive trial results were not available to further explore underlying factors for the association between funding source and outcome reporting.

Conclusion

In this sample of registered drug trials, those funded by industry were less likely to be published within 2 years of study completion and were more likely to report positive outcomes than were trials funded by other sources.

Primary Funding Source

National Library of Medicine and National Institute of Child Health and Human Development, National Institutes of Health.

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.

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.

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.

Background

The $1.1 billion investment in comparative effectiveness research will reshape the evidence-base supporting decisions about treatment effectiveness, safety, and cost. Defining the current prevalence and characteristics of comparative effectiveness (CE) research will enable future assessments of the impact of this program.

Methods

We conducted an observational study of clinical trials addressing priority research topics defined by the Institute of Medicine and conducted in the US between 2007 and 2010. Trials were identified in ClinicalTrials.gov. Main outcome measures were the prevalence of comparative effectiveness research, nature of comparators selected, funding sources, and impact of these factors on results.

Results

231 (22.3%; 95% CI 19.8%–24.9%) studies were CE studies and 804 (77.7%; 95% CI, 75.1%–80.2%) were non-CE studies, with 379 (36.6%; 95% CI, 33.7%–39.6%) employing a placebo control and 425 (41.1%; 95% CI, 38.1%–44.1%) no control. The most common treatments examined in CE studies were drug interventions (37.2%), behavioral interventions (28.6%), and procedures (15.6%). Study findings were favorable for the experimental treatment in 34.8% of CE studies and greater than twice as many (78.6%) non-CE studies (P<0.001). CE studies were more likely to receive government funding (P = 0.003) and less likely to receive industry funding (P = 0.01), with 71.8% of CE studies primarily funded by a noncommercial source. The types of interventions studied differed based on funding source, with 95.4% of industry trials studying a drug or device. In addition, industry-funded CE studies were associated with the fewest pediatric subjects (P<0.001), the largest anticipated sample size (P<0.001), and the shortest study duration (P<0.001).

Conclusions

In this sample of studies examining high priority areas for CE research, less than a quarter are CE studies and the majority is supported by government and nonprofits. The low prevalence of CE research exists across CE studies with a broad array of interventions and characteristics.

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.

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.

Background:

Starting in the 2006/2007 influenza season, the US Advisory Committee on Immunization Practices expanded its recommendations for seasonal influenza vaccination to include healthy children aged 24–59 months. The parallel Canadian organization, the National Advisory Committee on Immunization, did not at that time issue a similar recommendation, thereby creating a natural experiment to evaluate the effect of the policy in the United States.

Methods:

We examined data for 2000/2001 through 2008/2009 and estimated relative changes in visits to the emergency department for influenza-like illness at two pediatric hospitals, one in Boston, Massachusetts, and the other in Montréal, Quebec, following the US policy change. Models were adjusted for virologic factors, seasonal trends and all-cause utilization of the emergency department.

Results:

Of 1 043 989 visits to the emergency departments of the two hospitals for any reason during the study period, 114 657 visits were related to influenza-like illness. Adjusted models estimated a 34% decline in rates of influenza-like illness among children two to four years old in the US hospital relative to the Canadian hospital (rate ratio 0.66, 95% confidence interval 0.58–0.75) following the 2006 policy change of the Advisory Committee on Immunization Practices. This was accompanied by more modest declines of 11% to 18% for the other age groups studied.

Interpretation:

The divergence in influenza rates among children in the US and Canadian sample populations after institution of the US policy to vaccinate children two to four years of age is evidence that the recommendation of the US Advisory Committee on Immunization Practices resulted in a reduction in influenza-related morbidity in the target group and may have indirectly affected other pediatric age groups. Provincial adoption of the 2010 recommendation of teh National Advisory Committee on Immunization in Canada to vaccinate childen two to four years of age might positively affect influenza morbidity in Canada.

Purpose

Adverse drug events (ADEs) are a common complication of medical care resulting in high morbidity and medical expenditure. Population level estimates of outpatient ADEs are limited. Our objective was to provide national estimates and characterizations of outpatient ADEs and determine risk factors associated with these events.

Methods

Data are from the National Center for Health Statistics which collects information on patient visits to outpatient clinics and emergency departments throughout the United States. We examined visits between 1995 and 2005 and measured the national annual estimates of and risk factors for outpatient ADEs requiring medical treatment.

Results

The national annual number of ADE-related visits was 4,335,990 (95%CI, 4,326,872–4,345,108). Visits for ADEs to outpatient clinics increased over the study period from 9.0 to 17.0 per 1000 persons (P value for trend<0.001). In multivariate analyses, factors associated with ADE visits included patient age (OR 2.13; 95%CI 1.63–2.79 for 65 years and older), number of medications taken by patient (OR, 1.88; 95%CI, 1.58–2.25 for five medications or more), and female gender (OR, 1.51; 95%CI, 1.34–1.71). Overall, outpatient ADEs resulted in 107,468 (95%CI, 89,011–125,925) hospital admissions annually, with older patients at highest risk for hospitalization (P value for trend<0.001).

Conclusions

Both patient age and polypharmacy use are risk factors for ADE-related healthcare visits, which have substantially increased in outpatient clinics between 1995 and 2005. The incidence of ADEs has particularly increased among patients 65 years and older with as many as 1 in 20 persons seeking medical care for an ADE.

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.

Background

Surveillance and response to diabetes may be accelerated through engaging online diabetes social networks (SNs) in consented research. We tested the willingness of an online diabetes community to share data for public health research by providing members with a privacy-preserving social networking software application for rapid temporal-geographic surveillance of glycemic control.

Methods and Findings

SN-mediated collection of cross-sectional, member-reported data from an international online diabetes SN entered into a software applicaction we made available in a “Facebook-like” environment to enable reporting, charting and optional sharing of recent hemoglobin A1c values through a geographic display. Self-enrollment by 17% (n = 1,136) of n = 6,500 active members representing 32 countries and 50 US states. Data were current with 83.1% of most recent A1c values reported obtained within the past 90 days. Sharing was high with 81.4% of users permitting data donation to the community display. 34.1% of users also displayed their A1cs on their SN profile page. Users selecting the most permissive sharing options had a lower average A1c (6.8%) than users not sharing with the community (7.1%, p = .038). 95% of users permitted re-contact. Unadjusted aggregate A1c reported by US users closely resembled aggregate 2007–2008 NHANES estimates (respectively, 6.9% and 6.9%, p = 0.85).

Conclusions

Success within an early adopter community demonstrates that online SNs may comprise efficient platforms for bidirectional communication with and data acquisition from disease populations. Advancing this model for cohort and translational science and for use as a complementary surveillance approach will require understanding of inherent selection and publication (sharing) biases in the data and a technology model that supports autonomy, anonymity and privacy.

In recent years the Web has come into its own as a social platform where health consumers are actively creating and consuming Web content. Moreover, as the Web matures, consumers are gaining access to personalized applications adapted to their health needs and interests. The creation of personalized Web applications relies on extracted information about the users and the content to personalize. The Social Web itself provides many sources of information that can be used to extract information for personalization apart from traditional Web forms and questionnaires.

This paper provides a review of different approaches for extracting information from the Social Web for health personalization. We reviewed research literature across different fields addressing the disclosure of health information in the Social Web, techniques to extract that information, and examples of personalized health applications. In addition, the paper includes a discussion of technical and socioethical challenges related to the extraction of information for health personalization.

Objective

To improve identification of pertussis cases by developing a decision model that incorporates recent, local, population-level disease incidence.

Design

Retrospective cohort analysis of 443 infants tested for pertussis (2003–7).

Measurements

Three models (based on clinical data only, local disease incidence only, and a combination of clinical data and local disease incidence) to predict pertussis positivity were created with demographic, historical, physical exam, and state-wide pertussis data. Models were compared using sensitivity, specificity, area under the receiver-operating characteristics (ROC) curve (AUC), and related metrics.

Results

The model using only clinical data included cyanosis, cough for 1 week, and absence of fever, and was 89% sensitive (95% CI 79 to 99), 27% specific (95% CI 22 to 32) with an area under the ROC curve of 0.80. The model using only local incidence data performed best when the proportion positive of pertussis cultures in the region exceeded 10% in the 8–14 days prior to the infant's associated visit, achieving 13% sensitivity, 53% specificity, and AUC 0.65. The combined model, built with patient-derived variables and local incidence data, included cyanosis, cough for 1 week, and the variable indicating that the proportion positive of pertussis cultures in the region exceeded 10% 8–14 days prior to the infant's associated visit. This model was 100% sensitive (p<0.04, 95% CI 92 to 100), 38% specific (p<0.001, 95% CI 33 to 43), with AUC 0.82.

Conclusions

Incorporating recent, local population-level disease incidence improved the ability of a decision model to correctly identify infants with pertussis. Our findings support fostering bidirectional exchange between public health and clinical practice, and validate a method for integrating large-scale public health datasets with rich clinical data to improve decision-making and public health.

OBJECTIVE

Adverse drug events(ADEs) are a common complication of medical care, but few pediatric data are available describing the frequency or epidemiology of these events. We estimated the national incidence of pediatric ADEs requiring medical treatment, described the pediatric population seeking care for ADEs, and characterized the events in terms of patient symptoms and medications implicated.

METHODS

Data were obtained from the National Center for Health Statistics, which collects information on patient visits to outpatient clinics and emergency departments throughout the United States. We analyzed data for children 0 to 18 years of age seeking medical treatment for an ADE between 1995 and 2005.

RESULTS

The mean annual number of ADE-related visits was 585 922 (95%confidence interval [CI]:503 687–668 156) of which 78% occurred in outpatient clinics and 12% occurred in emergency departments. Children 0 to 4 years of age had the highest incidence of ADE-related visits, accounting for 43.2% (95% CI: 35.6%–51.2%) of visits. The most common symptom manifestations were dermatologic conditions (45.4% [95% CI: 36.9%–54.1%]) and gastrointestinal symptoms (16.5% [95% CI: 11.1%–23.8%]). The medication classes most frequently implicated in an ADE were antimicrobial agents (27.5% [95% CI: 21.5%–34.5%]), central nervous system agents (6.5% [95% CI: 4.0%–10.5%]), and hormones (6.1% [95% CI: 3.1%–11.6%]). While ADEs related to antimicrobial agents were most common among children 0 to 4 years old and decreased in frequency among older children, ADEs resulting from central nervous system agents and hormones increased in frequency among children 5 to 11 and 12 to 18 years old.

CONCLUSIONS

ADEs result in a substantial number of health care visits, particularly in outpatient clinics. The incidence of ADEs and medications implicated vary by age, indicating that age-specific approaches for monitoring and preventing ADEs may be most effective.

Background

The development of health information technologies should be informed by iterative experiments in which qualitative and quantitative methodologies provide a deeper understanding of the abilities, needs, and goals of the target audience for a personal health application.

Objective

Our objective was to create an interface for parents of children with attention-deficit hyperactivity/disorder (ADHD) to enter disease-specific information to facilitate data entry with minimal task burden.

Methods

We developed an ADHD-specific personal health application to support data entry into a personally controlled health record (PCHR) using a three-step, iterative process: (1) a needs analysis by conducting focus groups with parents of children with ADHD and an heuristic evaluation of a prerelease version of a PCHR, (2) usability testing of an initial prototype personal health application following a “think aloud” protocol, (3) performance testing of a revised prototype, and (4) finalizing the design and functionality of the ADHD personal health application. Study populations for the three studies (focus groups and two usability testing studies) were recruited from organizations in the greater Boston area. Study eligibility included being an English- or Spanish-speaking parent who was the primary caretaker of a school-age child with ADHD. We determined subjects’ health literacy using the Test of Functional Health Literacy in Adults (TOFHLA). We assessed subjects’ task burden using the National Aeronautics and Space Administration (NASA) Task Load Index. To assess the impact of factors associated with the time spent entering data, we calculated Pearson correlation coefficients (r) between time on task and both task burden and subject characteristics. We conducted t tests to determine if time on task was associated with successful task completion.

Results

The focus groups included three cohorts: 4 Spanish-speaking parents with diverse health literacy, 4 English-speaking parents with lower health literacy, and 7 English-speaking parents with higher health literacy. Both the initial usability testing cohort (n = 10) and the performance-testing cohort (n = 7) included parents of diverse health literacy and ethnicity. In performance testing, the prototype PCHRs captured patient-specific data with a mean time on task of 11.9 minutes (SD 6.5). Task burden experienced during data entry was not associated with successful task completion (P = .92). Subjects’ past computer experience was highly correlated with time on task (r = .86, P = .01), but not with task burden (r = .18, P = .69). The ADHD personal health application was finalized in response to these results by (1) simplifying the visual environment, (2) including items to support users limited by health literacy or technology experience, and (3) populating the application’s welcome screen with pictures of culturally diverse families to establish a personal family-oriented look and feel.

Conclusions

Our patient-centered design process produced a usable ADHD-specific personal health application that minimizes the burden of data entry.

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.

To support a rich ecosystem of third-party applications around a personally controlled health record (PCHR), we have redesigned Indivo, the original PCHR, as a web-based platform with feature-level substitutability. Core to this new release is the Indivo X Application Programming Interface (API), the contract between the PCHR platform and the end-user apps. Using rapid iterative development to build a minimal feature set from real-world requirements, the resulting Indivo X API, now in public stable beta, is enabling developers, including third-party contributors, to quickly create and integrate novel features into patients’ online records, ultimately building a fully customizable experience for diverse patient needs.

Background

Historical studies of news media have suggested an association between reporting and increased drug abuse. Period effects for substance use have been documented for different classes of legal and illicit substances, with the suspicion that media publicity may have played major roles in their emergence. Previous analyses have drawn primarily from qualitative evidence; the temporal relationship between media reporting volume and adverse health consequences has not been quantified nationally. We set out to explore whether we could find a quantitative relationship between media reports about prescription opioid abuse and overdose mortality associated with these drugs. We assessed whether increases in news media reports occurred before or after increases in overdose deaths.

Methodology/Principal Findings

Our ecological study compared a monthly time series of unintentional poisoning deaths involving short-acting prescription opioid substances, from 1999 to 2005 using multiple cause-of-death data published by the National Center for Health Statistics, to monthly counts of English-language news articles mentioning generic and branded names of prescription opioids obtained from Google News Archives from 1999 to 2005. We estimated the association between media volume and mortality rates by time-lagged regression analyses. There were 24,272 articles and 30,916 deaths involving prescription opioids during the seven-year study period. Nationally, the number of articles mentioning prescription opioids increased dramatically starting in early 2001, following prominent coverage about the nonmedical use of OxyContin. We found a significant association between news reports and deaths, with media reporting preceding fatal opioid poisonings by two to six months and explaining 88% (p<0.0001, df 78) of the variation in mortality.

Conclusions/Significance

While availability, structural, and individual predispositions are key factors influencing substance use, news reporting may enhance the popularity of psychoactive substances. Albeit ecological in nature, our finding suggests the need for further evaluation of the influence of news media on health. Reporting on prescription opioids conforms to historical patterns of news reporting on other psychoactive substances.

Objective To determine whether longitudinal data in patients’ historical records, commonly available in electronic health record systems, can be used to predict a patient’s future risk of receiving a diagnosis of domestic abuse.

Design Bayesian models, known as intelligent histories, used to predict a patient’s risk of receiving a future diagnosis of abuse, based on the patient’s diagnostic history. Retrospective evaluation of the model’s predictions using an independent testing set.

Setting A state-wide claims database covering six years of inpatient admissions to hospital, admissions for observation, and encounters in emergency departments.

Population All patients aged over 18 who had at least four years between their earliest and latest visits recorded in the database (561 216 patients).

Main outcome measures Timeliness of detection, sensitivity, specificity, positive predictive values, and area under the ROC curve.

Results 1.04% (5829) of the patients met the narrow case definition for abuse, while 3.44% (19 303) met the broader case definition for abuse. The model achieved sensitive, specific (area under the ROC curve of 0.88), and early (10-30 months in advance, on average) prediction of patients’ future risk of receiving a diagnosis of abuse. Analysis of model parameters showed important differences between sexes in the risks associated with certain diagnoses.

Conclusions Commonly available longitudinal diagnostic data can be useful for predicting a patient’s future risk of receiving a diagnosis of abuse. This modelling approach could serve as the basis for an early warning system to help doctors identify high risk patients for further screening.

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.