Changing US Support for Public Health Data Use Through Pandemic and Political Turmoil.

Policy Points This study examines the impact of several world-changing events in 2020, such as the pandemic and widespread racism protests, on the US population's comfort with the use of identifiable data for public health. Before the 2020 election, there was no significant difference between Democrats and Republicans. However, African Americans exhibited a decrease in comfort that was different from other subgroups. Our findings suggest that the public remained supportive of public health data activities through the pandemic and the turmoil of 2020 election cycle relative to other data use. However, support among African Americans for public health data use experienced a unique decline compared to other demographic groups. CONTEXT: Recent legislative privacy efforts have not included special provisions for public health data use. Although past studies documented support for public health data use, several global events in 2020 have raised awareness and concern about privacy and data use. This study aims to understand whether the events of 2020 affected US privacy preferences on secondary uses of identifiable data, focusing on public health and research uses. METHODS: We deployed two online surveys-in February and November 2020-on data privacy attitudes and preferences using a choice-based-conjoint analysis. Participants received different data-use scenario pairs-varied by the type of data, user, and purpose-and selected scenarios based on their comfort. A hierarchical Bayes regression model simulated population preferences. FINDINGS: There were 1,373 responses. There was no statistically significant difference in the population's data preferences between February and November, each showing the highest comfort with population health and research data activities and the lowest with profit-driven activities. Most subgroups' data preferences were comparable with the population's preferences, except African Americans who showed significant decreases in comfort with population health and research. CONCLUSIONS: Despite world-changing events, including a pandemic, we found bipartisan public support for using identifiable data for public health and research. The decreasing support among African Americans could relate to the increased awareness of systemic racism, its harms, and persistent disparities. The US population's preferences support including legal provisions that permit public health and research data use in US laws, which are currently lacking specific public health use permissions.

Geographic disparities in telemedicine mental health use by applying three way ANOVA on Medicaid claims population data.

BACKGROUND: Utilization of telemedicine care for vulnerable and low income populations, especially individuals with mental health conditions, is not well understood. The goal is to describe the utilization and regional disparities of telehealth care by mental health status in Texas. Texas Medicaid claims data were analyzed from September 1, 2012, to August 31, 2018 for Medicaid patients enrolled due to a disability. METHODS: We analyzed the growth in telemedicine care based on urban, suburban, and rural, and mental health status. We used t-tests to test for differences in sociodemographic characteristics across patients and performed a three-way Analyses of Variance (ANOVA) to evaluate whether the growth rates from 2013 to 2018 were different based on geography and patient type. We then estimated patient level multivariable ordinary least square regression models to estimate the relationship between the use of telemedicine and patient characteristics in 2013 and separately in 2018. Outcome was a binary variable of telemedicine use or not. Independent variables of interest include geography, age, gender, race, ethnicity, plan type, Medicare eligibility, diagnosed mental health condition, and ECI score. RESULTS: Overall, Medicaid patients with a telemedicine visit grew at 81%, with rural patients growing the fastest (181%). Patients with a telemedicine visit for a mental health condition grew by 77%. Telemedicine patients with mental health diagnoses tended to have 2 to 3 more visits per year compared to non-telemedicine patients with mental health diagnoses. In 2013, multivariable regressions display that urban and suburban patients, those that had a mental health diagnosis were more likely to use telemedicine, while patients that were younger, women, Hispanics, and those dual eligible were less likely to use telemedicine. By 2018, urban and suburban patients were less likely to use telemedicine. CONCLUSIONS: Growth in telemedicine care was strong in urban and rural areas between 2013 and 2018 even before the COVID-19 pandemic. Those with a mental health condition who received telemedicine care had a higher number of total mental health visits compared to those without telemedicine care. These findings hold across all geographic groups and suggest that mental health telemedicine visits did not substitute for face-to-face mental health visits.

Data Sharing in a Decentralized Public Health System: Lessons From COVID-19 Syndromic Surveillance.

The COVID-19 pandemic revealed that data sharing challenges persist across public health information systems. We examine the specific challenges in sharing syndromic surveillance data between state, local, and federal partners. These challenges are complicated by US federalism, which decentralizes public health response and creates friction between different government units. The current policies restrict federal access to state and local syndromic surveillance data without each jurisdiction's consent. These policies frustrate legitimate federal governmental interests and are contrary to ethical guidelines for public health data sharing. Nevertheless, state and local public health agencies must continue to play a central role as there are important risks in interpreting syndromic surveillance data without understanding local contexts. Policies establishing a collaborative framework will be needed to support data sharing between federal, state, and local partners. A collaborative framework would be enhanced by a governance group with robust state and local involvement and policy guardrails to ensure the use of data is appropriate. These policy and relational challenges must be addressed to actualize a truly national public health information system.

Case study on communicating with research ethics committees about minimizing risk through software: an application for record linkage in secondary data analysis.

Objective: In retrospective secondary data analysis studies, researchers often seek waiver of consent from institutional Review Boards (IRB) and minimize risk by utilizing complex software. Yet, little is known about the perspectives of IRB experts on these approaches. To facilitate effective communication about risk mitigation strategies using software, we conducted two studies with IRB experts to co-create appropriate language when describing a software to IRBs. Materials and Methods: We conducted structured focus groups with IRB experts to solicit ideas on questions regarding benefits, risks, and informational needs. Based on these results, we developed a template IRB application and template responses for a generic study using privacy-enhancing software. We then conducted a three-round Delphi study to refine the template IRB application and the template responses based on expert panel feedback. To facilitate participants' deliberation, we shared the revisions and a summary of participants' feedback during each Delphi round. Results: 11 experts in two focus groups generated 13 ideas on risks, benefits, and informational needs. 17 experts participated in the Delphi study with 13 completing all rounds. Most agreed that privacy-enhancing software will minimize risk, but regardless all secondary data studies have an inherent risk of unexpected disclosures. The majority (84.6%) noted that subjects in retrospective secondary data studies experience no greater risks than the risks experienced in ordinary life in the modern digital society. Hence, all retrospective data-only studies with no contact with subjects would be minimal risk studies. Conclusion: First, we found fundamental disagreements in how some IRB experts view risks in secondary data research. Such disagreements are consequential because they can affect determination outcomes and might suggest IRBs at different institutions might come to different conclusions regarding similar study protocols. Second, the highest ranked risks and benefits of privacy-enhancing software in our study were societal rather than individual. The highest ranked benefits were facilitating more research and promoting responsible data governance practices. The highest ranked risks were risk of invalid results from systematic user error or erroneous algorithms. These societal considerations are typically more characteristic of public health ethics as opposed to the bioethical approach of research ethics, possibly reflecting the difficulty applying a bioethical approach (eg, informed consent) in secondary data studies. Finally, the development of privacy-enhancing technology for secondary data research depends on effective communication and collaboration between the privacy experts and technology developers. Privacy is a complex issue that requires a holistic approach that is best addressed through privacy-by-design principles. Privacy expert participation is important yet often neglected in this design process. This study suggests best practice strategies for engaging the privacy community through co-developing companion documents for software through participatory design to facilitate transparency and communication. In this case study, the final template IRB application and responses we released with the open-source software can be easily adapted by researchers to better communicate with their IRB when using the software. This can help increase responsible data governance practices when many software developers are not research ethics experts.

Racial and Ethnic Disparities in Hepatocellular Carcinoma Treatment Receipt in the United States: A Systematic Review and Meta-Analysis.

BACKGROUND: Racial and ethnic disparities in hepatocellular carcinoma (HCC) prognosis exist, partly related to differential failures along the cancer care continuum. We characterized racial and ethnic disparities in treatment receipt among patients with HCC in the United States. METHODS: We searched Medline, Embase, and CINAHL databases to identify studies published between January 2012 and March 2022 reporting HCC treatment receipt among adult patients with HCC, stratified by race or ethnicity. We calculated pooled odds ratios for HCC treatment using random effects models. RESULTS: We identified 15 studies with 320,686 patients (65.8% White, 13.9% Black, 10.4% Asian, and 8.5% Hispanic). Overall, 33.2% of HCC patients underwent any treatment, and 22.7% underwent curative treatment. Compared with White patients, Black patients had lower odds of any treatment (OR 0.67, 95% CI 0.55-0.81) and curative treatment (OR 0.74, 95% CI 0.71-0.78). Similarly, Hispanic patients had lower pooled odds of curative treatment (OR 0.79, 95% CI 0.73-0.84). CONCLUSIONS: There were significant racial and ethnic disparities in HCC treatment receipt, with Black patients having lower odds of receiving any and curative treatment while Hispanic patients having lower odds of curative treatment. IMPACT: Racial and ethnic differences in treatment receipt serve as an intervention target to reduce disparities in HCC prognosis.

Determinants of Persistent, Multi-Year, Frequent Emergency Department Use Among Children and Young Adults in Three US States.

OBJECTIVE: This study examines the factors associated with persistent, multi-year, and frequent emergency department (ED) use among children and young adults. METHODS: We conducted a retrospective secondary analysis using the 2012-2017 Healthcare Cost and Utilization Project State Emergency Department Databases for children and young adults aged 0-19 who visited any ED in Florida, Massachusetts, and New York. We estimated the association between persistent frequent ED use and individuals' characteristics using multivariable logistic regression models. RESULTS: Among 1.3 million patients with 1.8 million ED visits in 2012, 2.9% (37,558) exhibited frequent ED use (≥4 visits in 2012) and accounted for 10.2% (181,138) of all ED visits. Longitudinal follow-up of frequent ED users indicated that 15.4% (5770) remained frequent users periodically over the next 1 or 2 years, while 2.2% (831) exhibited persistent frequent use over the next 3-5 years. Over the 6-year study period, persistent frequent users had 31,551 ED visits at an average of 38.0 (standard deviation = 16.2) visits. Persistent frequent ED use was associated with higher intensity of ED use in 2012, public health insurance coverage, inconsistent health insurance coverage over time, residence in non-metropolitan and lower-income areas, multimorbidity, and more ED visits for less medically urgent conditions. CONCLUSIONS: Clinicians and policymakers should consider the diverse characteristics and needs of pediatric persistent frequent ED users compared to broader definitions of frequent users when designing and implementing interventions to improve health outcomes and contain ED visit costs.

Economic Evaluation of Blood Pressure Monitoring Techniques in Patients With Hypertension: A Systematic Review.

Importance: Blood pressure monitoring is critical to the timely diagnosis and treatment of hypertension. At-home self-monitoring techniques are highly effective in managing high blood pressure; however, evidence regarding the cost-effectiveness of at-home self-monitoring compared with traditional monitoring in clinical settings remains unclear. Objective: To identify and synthesize published research examining the cost-effectiveness of at-home blood pressure self-monitoring relative to monitoring in a clinical setting among patients with hypertension. Evidence Review: A systematic literature search of 5 databases (PubMed, MEDLINE, Embase, EconLit, and CINAHL) followed by a backward citation search was conducted in September 2022. Full-text, peer-reviewed articles in English including patients with high blood pressure (systolic blood pressure ≥130 mm Hg and diastolic blood pressure ≥80 mm Hg) at baseline were included. Data from studies comparing at-home self-monitoring with clinical-setting monitoring alternatives were extracted, and the outcomes of interest included incremental cost-effectiveness and cost-utility ratios. Non-peer-reviewed studies or studies with pregnant women and children were excluded. To ensure accuracy and reliability, 2 authors independently evaluated all articles for eligibility and extracted relevant data from the selected articles. Findings: Of 1607 articles identified from 5 databases, 16 studies met the inclusion criteria. Most studies were conducted in the US (6 [40%]) and in the UK (6 [40%]), and almost all studies (14 [90%]) used a health care insurance system perspective to determine costs. Nearly half the studies used quality-adjusted life-years gained and cost per 1-mm Hg reduction in blood pressure as outcomes. Overall, at-home blood pressure monitoring (HBPM) was found to be more cost-effective than monitoring in a clinical setting, particularly over a minimum 10-year time horizon. Among studies comparing HBPM alone vs 24-hour ambulatory blood pressure monitoring (ABPM) or HBPM combined with additional support or team-based care, the latter were found to be more cost-effective. Conclusions and Relevance: In this systematic review, at-home blood pressure self-monitoring, particularly using automatic 24-hour continuous blood pressure measurements or combined with additional support or team-based care, demonstrated the potential to be cost-effective long-term compared with care in the physical clinical setting and could thus be prioritized for patients with hypertension from a cost-effectiveness standpoint.

Using motor vehicle crash records for injury surveillance and research in agriculture and forestry.

PROBLEM: Fatal injuries in the agriculture, forestry, and fishing sector (AgFF) outweigh those across all sectors in the United States. Transportation-related injuries are among the top contributors to these fatal events. However, traditional occupational injury surveillance systems may not completely capture crashes involving farm vehicles and logging trucks, specifically nonfatal events. METHODS: The study aimed to develop an integrated database of AgFF-related motor-vehicle crashes for the southwest (Arkansas, Louisiana, New Mexico, Oklahoma, and Texas) and to use these data to conduct surveillance and research. Lessons learned during the pursuit of these aims were cataloged. Activities centered around the conduct of traditional statistical and geospatial analyses of structured data fields and natural language processing of free-text crash narratives. RESULTS: The structured crash data in each state include fields that allowed farm vehicles or equipment and logging trucks to be identified. The variable definitions and coding were not consistent across states but could be harmonized. All states recorded data fields pertaining to person, vehicle, and crash/environmental factors. Structured data supported the construction of crash severity models and geospatial analyses. Law enforcement provided additional details on crash causation in free-text narratives. Crash narratives contained sufficient text to support viable machine learning models for farm vehicle or equipment crashes, but not for logging truck narratives. DISCUSSION: Crash records can help to fill research and surveillance gaps in AgFF in the southwest region. This supports traffic safety's evolution to the current Safe System paradigm. There is a conceptual linkage between the Safe System and Total Worker Health approaches, providing a bridge between traffic safety and occupational health. PRACTICAL APPLICATIONS: Despite limitations, crash records can be an important component of injury surveillance for events involving AgFF vehicles. They also can be used to inform the selection and evaluation of traffic countermeasures and behavioral interventions.

Real-World Adherence and Effectiveness of Remote Patient Monitoring Among Medicaid Patients With Diabetes: Retrospective Cohort Study.

BACKGROUND: The prevalence of diabetes in the United States is high and increasing, and it is also the most expensive chronic condition in the United States. Self-monitoring of blood glucose or continuous glucose monitoring are potential solutions, but there are barriers to their use. Remote patient monitoring (RPM) with appropriate support has the potential to provide solutions. OBJECTIVE: We aim to investigate the adherence of Medicaid patients with diabetes to daily RPM protocols, the relationship between adherence and changes in blood glucose levels, and the impact of daily testing time on blood glucose changes. METHODS: This retrospective cohort study analyzed real-world data from an RPM company that provides services to Texas Medicaid patients with diabetes. Overall, 180 days of blood glucose data from an RPM company were collected to assess transmission rates and blood glucose changes, after the first 30 days of data were excluded due to startup effects. Patients were separated into adherent and nonadherent cohorts, where adherent patients transmitted data on at least 120 of the 150 days. z tests and t tests were performed to compare transmission rates and blood glucose changes between 2 cohorts. In addition, we analyzed blood glucose changes based on their testing time-between 1 AM and 10 AM, 10 AM and 6 PM, and 6 PM and 1 AM. RESULTS: Mean patient age was 70.5 (SD 11.8) years, with 66.8% (n=255) of them being female, 91.9% (n=351) urban, and 89% (n=340) from south Texas (n=382). The adherent cohort (n=186, 48.7%) had a mean transmission rate of 82.8% before the adherence call and 91.1% after. The nonadherent cohort (n=196, 51.3%) had a mean transmission rate of 45.9% before and 60.2% after. The mean blood glucose levels of the adherent cohort decreased by an average of 9 mg/dL (P=.002) over 5 months. We also found that variability of blood glucose level of the adherent cohort improved 3 mg/dL (P=.03) over the 5-month period. Both cohorts had the majority of their transmissions between 1 AM and 10 AM, with 70.5% and 53.2% for the adherent and nonadherent cohorts, respectively. The adherent cohort had decreasing mean blood glucose levels over 5 months, with the largest decrease during the 6 PM to 1 AM time period (30.9 mg/dL). Variability of blood glucose improved only for those tested from 10 AM to 6 PM, with improvements of 6.9 mg/dL (P=.02). Those in the nonadherent cohort did not report significant changes. CONCLUSIONS: RPM can help manage diabetes in Medicaid clients by improving adherence rates and glycemic control. Adherence calls helped improve adherence rates, but some patients still faced challenges in transmitting blood glucose levels. Nonetheless, RPM has the potential to reduce the risk of adverse outcomes associated with diabetes.

Prediagnostic CT or MRI Utilization and Outcomes in Hepatocellular Carcinoma: SEER-Medicare Database Analysis.

Ultrasound-based surveillance has suboptimal sensitivity for early hepatocellular carcinoma (HCC) detection, generating interest in alternative surveillance modalities. We aim to investigate the association between prediagnostic CT or MRI and overall survival in a contemporary cohort of patients with HCC. Using the Surveillance Epidemiology and End Results (SEER)-Medicare database, we analyzed Medicare beneficiaries diagnosed with HCC between 2011 and 2015. Proportion of time covered (PTC) was defined as the proportion of the 36-month period prior to HCC diagnosis in which patients had received abdominal imaging (ultrasound, CT, MRI). Cox proportional hazards regression was used to investigate the association between PTC and overall survival. Among 5,098 patients with HCC, 3,293 (65%) patients had abdominal imaging prior to HCC diagnosis, of whom 67% had CT/MRI. Median PTC by any abdominal imaging was 5.6% [interquartile range (IQR): 0%-36%], with few patients having PTC >50%. Compared with no abdominal images, ultrasound [adjusted HR (aHR): 0.87, 95% confidence interval (CI): 0.79-0.95] and CT/MRI group (aHR: 0.68, 95% CI: 0.63-0.74) were associated with improved survival. Lead-time adjusted analysis showed improved survival continued to be observed with CT/MRI (aHR: 0.80, 95% CI: 0.74-0.87) but not ultrasound (aHR: 1.00, 95% CI: 0.91-1.10). Increased PTC was associated with improved survival, with a larger effect size observed with CT/MRI (aHR per 10%: 0.93, 95% CI: 0.91-0.95) than ultrasound (aHR per 10%: 0.96, 95% CI: 0.95-0.98). In conclusion, PTC by abdominal images was associated with improved survival in patients with HCC, with potential greater benefit using CT/MRI. Regular utilization of CT/MRI before cancer diagnosis may have potential survival benefit compared to ultrasound in patients with HCC. Significance: Our population-based study using SEER-Medicare database demonstrated that proportion of time covered by abdominal imaging was associated with improved survival in patients with HCC, with potential greater benefit using CT/MRI. The results suggest that CT/MRI surveillance may have potential survival benefit compared with ultrasound surveillance in high-risk patients for HCC. A larger prospective study should be conducted for external validation.

Factors associated with unrecognized cirrhosis in patients with hepatocellular carcinoma.

BACKGROUND/AIMS: Cirrhosis is the most important risk factor of hepatocellular carcinoma (HCC), and patients with cirrhosis are recommended to receive semiannual surveillance for early HCC detection. However, early cirrhosis is often asymptomatic and can go undiagnosed for years, leading to underuse of HCC surveillance in clinical practice. We characterized the frequency and associated factors of unrecognized cirrhosis in a national sample of patients with HCC from the United States. METHODS: HCC patients aged 68 years and older, diagnosed during 2011 to 2015 were included from the SEERMedicare Linked Database. If cirrhosis was diagnosed within 6 months immediately preceding HCC diagnosis or after HCC diagnosis, cases were categorized as unrecognized cirrhosis. Factors associated with unrecognized cirrhosis were identified using logistic regression analyses. Factors associated with overall survival were evaluated using Cox regression analyses. RESULTS: Among 5,098 HCC patients, 74.8% patients had cirrhosis. Among those with cirrhosis, 57.4% had unrecognized cirrhosis, with the highest proportion (76.3%) among those with NAFLD-related HCC. Male sex (aOR: 2.12, 95% CI: 1.83-2.46), non-Hispanic Black race (aOR: 1.93, 95% CI: 1.45-2.57), and NAFLD etiology (aOR: 4.46, 95% CI: 3.68-5.41) were associated with having unrecognized cirrhosis. Among NAFLD-related HCC patients, male sex (aOR: 2.32, 95% CI: 1.71-3.14) was associated with unrecognized cirrhosis. Unrecognized cirrhosis was independently associated with worse overall survival (aHR: 1.17, 95% CI: 1.08-1.27) compared to recognized cirrhosis. CONCLUSION: Unrecognized cirrhosis is common in NAFLD-related HCC, particularly among male and Black patients, highlighting these groups as important intervention targets to improve HCC surveillance uptake and outcomes.

Adult Cancer-Related Emergency Department Utilization: An Analysis of Trends and Outcomes From Emergency Departments in Maryland and New York.

PURPOSE: To explore emergency department (ED) visits by adults with cancer and to estimate associations between inpatient admissions through the ED and mortality with sociodemographic and clinical factors within this cohort. METHODS: We conducted a retrospective, pooled, cross-sectional analysis of the Healthcare Cost and Utilization State Emergency Department Databases and State Inpatient Databases for Maryland and New York from January 2013 to December 2017. We examined inpatient admissions through the ED and mortality using frequencies. Among patients with cancer, multivariable regressions were used to estimate sociodemographic and clinical factors associated with inpatient admissions and outpatient ED and inpatient mortality overall. RESULTS: Among 22.7 million adult ED users, 1.3 million (5.7%) had at least one cancer-related diagnosis. ED visit rates per 100,000 population increased annually throughout the study period for patients with cancer and were 9.9% higher in 2017 compared with 2013 (2013: 303.5; 2017: 333.6). Having at least one inpatient admission (68.7% v 20.5%; P < .001) and inpatient or ED mortality (6.5% v 1.0%; P < .001) were higher among ED users with cancer compared with those without. Among patients with cancer, being uninsured (adjusted odds ratio, 0.52; 95% CI, 0.44 to 0.62) compared with having Medicare coverage and non-Hispanic Black (adjusted odds ratio, 0.86; 95% CI, 0.80 to 0.92) compared with non-Hispanic White were associated with decreased odds of inpatient admissions. In contrast, patients with cancer without health insurance, non-Hispanic Black patients, and residents of nonlarge metropolitan areas and of areas with lower household incomes had increased odds of mortality. CONCLUSION: High inpatient admissions through the ED and mortality among adult patients with cancer, coupled with an increase in cancer-related ED visit rates and observed disparities in outcomes, highlight the need to improve access to oncologic services to contain ED use and improve care for patients with cancer.

Clinical Characteristics and Outcomes of Nonalcoholic Fatty Liver Disease-Associated Hepatocellular Carcinoma in the United States.

BACKGROUND & AIMS: The extent to which nonalcoholic fatty liver disease (NAFLD) contributes to hepatocellular carcinoma (HCC) prevalence in contemporary practices and whether there are any etiologic differences in surveillance receipt, tumor stage, and overall survival (OS) remain unclear. We aimed to estimate the burden of NAFLD-related HCC and magnitude of associations with surveillance receipt, clinical presentation, and outcomes in a contemporary HCC cohort. METHODS: In a cohort of HCC patients from the Surveillance, Epidemiology and End Results-Medicare database between 2011 and 2015, we used multivariable logistic regression to identify factors associated with surveillance receipt, early-stage tumor detection, and curative treatment. Cox regression was used to identify factors associated with OS. RESULTS: Among 5098 HCC patients, NAFLD was the leading etiology, accounting for 1813 cases (35.6%). Compared with those with hepatitis C-related HCC, NAFLD was associated with lower HCC surveillance receipt (adjusted odds ratio, 0.22; 95% confidence interval [CI], 0.17-0.28), lower early-stage HCC detection (adjusted odds ratio, 0.49; 95% CI, 0.40-0.60), and modestly worse OS (adjusted hazard ratio, 1.20; 95% CI, 1.09-1.32). NAFLD subgroup analysis showed that early-stage HCC, absence of ascites/hepatic encephalopathy, surveillance, and curative treatment receipt were associated with improved OS. NAFLD patients with coexisting liver disease were more likely to have surveillance, early-stage detection, curative treatment, and improved OS than NAFLD patients without coexisting liver diseases. CONCLUSIONS: NAFLD is the leading etiology of HCC among Medicare beneficiaries. Compared with other etiologies, NAFLD was associated with lower HCC surveillance receipt, early-stage detection, and modestly poorer survival. Multifaceted interventions for improving surveillance uptake are needed to improve prognosis of patients with NAFLD-related HCC.

Racial, Ethnic, and Socioeconomic Disparities in Treatment Delay Among Patients With Hepatocellular Carcinoma in the United States.

BACKGROUND & AIMS: Failures have been reported across the cancer care continuum in patients with hepatocellular carcinoma (HCC); however, the impact of treatment delays on outcomes has not been well-characterized. We described the prevalence of treatment delays in a racially and ethnically diverse cohort of patients and its association with overall survival. METHODS: Using the Surveillance, Epidemiology, and End Results-Medicare database, we identified patients diagnosed with HCC between 2001 and 2015. We performed multivariable logistic regression analysis to identify factors associated with treatment delay (ie, receipt of HCC-directed therapy >3 months after diagnosis). Cox proportional hazards regression analysis with a 5-month landmark was used to characterize the association between treatment delay and overall survival, accounting for immortal time bias. RESULTS: Of 8450 patients with treatment within 12 months of HCC diagnosis, 1205 (14.3%) experienced treatment delays. The proportion with treatment delays ranged from 6.8% of patients undergoing surgical resection to 21.6% of those undergoing liver transplantation. In multivariable analysis, Black patients (odds ratio, 1.96; 95% confidence interval [CI], 1.21-3.15) and those living in high poverty neighborhoods (odds ratio, 1.55; 95% CI, 1.25-1.92) were more likely to experience treatment delays than white patients and those living in low poverty neighborhoods, respectively. Treatment delay was independently associated with worse survival (hazard ratio 1.15, 95% CI, 1.05-1.25). CONCLUSIONS: Nearly 1 in 7 patients with HCC experience treatment delays, with higher odds in Black patients and those living in high poverty neighborhoods. Treatment delays are associated with worse survival, highlighting a need for interventions to improve time-to-treatment.

Healthcare Costs for Medicare Patients With Hepatocellular Carcinoma in the United States.

BACKGROUND & AIMS: Hepatocellular carcinoma (HCC) has an increasing mortality in the United States and is a leading cause of morbidity and mortality in patients with cirrhosis. We aimed to estimate the financial burden related to HCC in a large nationally representative United States cohort. METHODS: We used the Surveillance, Epidemiology, and End Results program (SEER)-Medicare database to identify 4525 adult patients who were diagnosed with HCC between 2011 and 2015. We generated a 1:1 propensity score-matched cohort of patients with cirrhosis but no HCC as a comparator group to define incremental HCC-specific costs beyond costs related to underlying cirrhosis. Our main outcomes were patient liabilities and Medicare payments in the first year after HCC diagnosis. RESULTS: Compared with patients with cirrhosis, those with HCC had higher incremental patient liabilities (median +$7166; interquartile range, $2401-$16,099) and Medicare payments (+$50,110; interquartile range, $142,42-$136,239; P < .001 for both) in the first year after diagnosis. Patients with HCC had significantly higher inpatient, outpatient, and physician service costs compared with the matched cohort with cirrhosis (P < .001 for all). Patients with early-stage HCC had lower incremental patient liabilities (median, $4195 vs $8238; P < .001) and Medicare payments (median, $28,207 vs $59,509; P < .001) than those with larger tumor burden. In multivariable median regression analysis, incremental patient liabilities and Medicare payments were significantly associated with the National Cancer Institute comorbidity index, nonalcoholic fatty liver disease etiology, presence of ascites, and presence of hepatic encephalopathy. CONCLUSIONS: Patients with HCC suffer from cancer-related financial burden, highlighting a need for policy interventions and financial support systems.

Financial Toxicities Persist for Cancer Survivors Irrespective of Current Cancer Status: An Analysis of Medical Expenditure Panel Survey.

This study estimates the out-of-pocket (OOP) expenditures for different cancer types among survivors with current vs no current cancer condition and across sex, which is understudied in the literature. This is a cross-sectional study of Medical Expenditure Panel Survey data for 2009-2018 where the primary outcome was the average per year OOP expenditure incurred by cancer survivors. Of 189 285 respondents, 15 010 (7.93%) were cancer survivors; among them, 46.28% had a current cancer condition. Average per year OOP expenditure for female survivors with a current condition of breast cancer ($1730), lung cancer ($1679), colon cancer ($1595), melanoma ($1783), non-Hodgkin lymphoma ($1656), nonmelanoma/other skin cancer (NMSC, $2118) and two or more cancers ($2310) were significantly higher than that of women with no history of cancer ($853, all P < .05). Similarly, average per year OOP expenditure for male survivors with a current condition of prostate cancer ($1457), lung cancer ($1131), colon cancer ($1471), melanoma ($1474), non-Hodgkin's lymphoma ($1653), NMSC ($1789), and bladder cancer ($2157) were significantly higher compared with the men with no history of cancer ($621, all P < .05). These differences persisted in survivors with no current cancer condition for breast cancer among women; prostate, lung, colon, and bladder cancer among men; and melanoma, NMSC, and two or more cancers among both sexes. OOP expenditure varied across cancer types and by sex for survivors with and without a current cancer condition. These findings highlight the need for targeted interventions for cancer survivors.

A Study of Publicly Available Resources Addressing Legal Data-Sharing Barriers: Systematic Assessment.

BACKGROUND: United States data protection laws vary depending on the data type and its context. Data projects involving social determinants of health often concern different data protection laws, making them difficult to navigate. OBJECTIVE: We systematically aggregated and assessed useful online resources to help navigate the data-sharing landscape. METHODS: We included publicly available resources that discussed legal data-sharing issues with some health relevance and published between 2010 and 2019. We conducted an iterative search with a common string pattern using a general-purpose search engine that targeted 24 different sectors identified by Data Across Sectors for Health. We scored each online resource for its depth of legal and data-sharing discussions and value for addressing legal barriers. RESULTS: Out of 3710 total search hits, 2721 unique URLs were reviewed for scope, 322 received full-text review, and 154 were selected for final coding. Legal agreements, consent, and agency guidance were the most widely covered legal topics, with HIPAA (The Health Insurance Portability and Accountability Act), Family Educational Rights and Privacy Act (FERPA), Title 42 of the Code of Federal Regulations Part 2 being the top 3 federal laws discussed. Clinical health care was the most prominent sector with a mention in 73 resources. CONCLUSIONS: This is the first systematic study of publicly available resources on legal data-sharing issues. We found existing gaps where resources covering certain laws or applications may be needed. The volume of resources we found is an indicator that real and perceived legal issues are a substantial barrier to efforts in leveraging data from different sectors to promote health.

Correction: Adherence to Telemonitoring Therapy for Medicaid Patients With Hypertension: Case Study.

[This corrects the article DOI: 10.2196/29018.].

Predictors of Pediatric Frequent Emergency Department Use Among 7.6 million Pediatric Patients in New York.

OBJECTIVE: This study examines the characteristics and factors associated with frequent emergency department (ED) utilization among the pediatric population. METHODS: We conducted a pooled cross-sectional secondary analysis using the Healthcare Cost and Utilization Project State Emergency and Inpatient Databases on ED visits to all hospitals in New York from 2011 to 2016 by patients aged 0 to 21. We used multivariable logistic and negative binomial regressions to investigate the predictors of multiple ED visits in the pediatric population. RESULTS: Overall, our study included 7.6 million pediatric patients who accounted for more than 12 million ED visits. Of those, 6.2% of patients were frequent ED users (≥4 visits/year), accounting for 20.8% of all ED visits (5.4 ED visits/year on average). The strongest predictors of frequent ED use were having at least one ED visit related to asthma (aOR = 8.37 [95% CI: 6.34-11.04]), mental health disorders (aOR = 9.67 [95% CI: 8.60-10.89]), or multiple comorbidities compared to none. Larger shares of ED visits for not-emergent conditions were also associated with frequent ED use (aOR = 6.63 [95% CI = 5.08-8.65]). Being covered by Medicaid compared to private (aOR = 0.45 [95% CI: 0.42-0.47]) or no insurance (aOR = 0.41 [95% CI: 0.38-0.44]) were further associated with frequent ED use. The results from the negative binomial regression yielded consistent findings. CONCLUSIONS: Pediatric patients who exhibit increased ED use are more medically complex and have increased healthcare needs that are inextricably tied to social determinants of health. Better integrated health systems should emphasize connecting vulnerable patients to appropriate social and primary care services outside of emergency settings.

Actual and perceived E-cigarettes behaviors among a national sample of U.S. college students.

Objective: Electronic cigarette use represents an important college health concern. This investigation assessed demographic and behavioral correlates associated with actual and perceived e-cigarette use among a national sample of American college students. Methods: Respondents (n = 19,861) comprised college students from over 40 distinct American higher education institutions. Multivariable logistic regression assessed whether (1) alcohol, tobacco or marijuana use were associated with e-cigarette use; (2) perceived peer use of alcohol, tobacco or marijuana were associated with perceived e-cigarette use. Results: Approximately 5% of survey respondents self-reported using e-cigarettes within the past month. More than 7 out of every 10 respondents, however, thought the 'typical student' was an e-cigarette user. As perceptions of typical student substance use increased, respondents were far more likely to contend the typical student used e-cigarettes. Discussion: In addition to adopting smoke-free campus policies, university officials should disseminate accurate information regarding e-cigarette behaviors of students.