Using EpiCore to Enable Rapid Verification of Potential Health Threats: Illustrated Use Cases and Summary Statistics.

BACKGROUND: The proliferation of digital disease-detection systems has led to an increase in earlier warning signals, which subsequently have resulted in swifter responses to emerging threats. Such highly sensitive systems can also produce weak signals needing additional information for action. The delays in the response to a genuine health threat are often due to the time it takes to verify a health event. It was the delay in outbreak verification that was the main impetus for creating EpiCore. OBJECTIVE: This paper describes the potential of crowdsourcing information through EpiCore, a network of voluntary human, animal, and environmental health professionals supporting the verification of early warning signals of potential outbreaks and informing risk assessments by monitoring ongoing threats. METHODS: This paper uses summary statistics to assess whether EpiCore is meeting its goal to accelerate the time to verification of identified potential health events for epidemic and pandemic intelligence purposes from around the world. Data from the EpiCore platform from January 2018 to December 2022 were analyzed to capture request for information response rates and verification rates. Illustrated use cases are provided to describe how EpiCore members provide information to facilitate the verification of early warning signals of potential outbreaks and for the monitoring and risk assessment of ongoing threats through EpiCore and its utilities. RESULTS: Since its launch in 2016, EpiCore network membership grew to over 3300 individuals during the first 2 years, consisting of professionals in human, animal, and environmental health, spanning 161 countries. The overall EpiCore response rate to requests for information increased by year between 2018 and 2022 from 65.4% to 68.8% with an initial response typically received within 24 hours (in 2022, 94% of responded requests received a first contribution within 24 h). Five illustrated use cases highlight the various uses of EpiCore. CONCLUSIONS: As the global demand for data to facilitate disease prevention and control continues to grow, it will be crucial for traditional and nontraditional methods of disease surveillance to work together to ensure health threats are captured earlier. EpiCore is an innovative approach that can support health authorities in decision-making when used complementarily with official early detection and verification systems. EpiCore can shorten the time to verification by confirming early detection signals, informing risk-assessment activities, and monitoring ongoing events.

Decreased Seasonal Influenza Rates Detected in a Crowdsourced Influenza-Like Illness Surveillance System During the COVID-19 Pandemic: Prospective Cohort Study.

BACKGROUND: Seasonal respiratory viruses had lower incidence during their 2019-2020 and 2020-2021 seasons, which overlapped with the COVID-19 pandemic. The widespread implementation of precautionary measures to prevent transmission of SARS-CoV-2 has been seen to also mitigate transmission of seasonal influenza. The COVID-19 pandemic also led to changes in care seeking and access. Participatory surveillance systems have historically captured mild illnesses that are often missed by surveillance systems that rely on encounters with a health care provider for detection. OBJECTIVE: This study aimed to assess if a crowdsourced syndromic surveillance system capable of detecting mild influenza-like illness (ILI) also captured the globally observed decrease in ILI in the 2019-2020 and 2020-2021 influenza seasons, concurrent with the COVID-19 pandemic. METHODS: Flu Near You (FNY) is a web-based participatory syndromic surveillance system that allows participants in the United States to report their health information using a brief weekly survey. Reminder emails are sent to registered FNY participants to report on their symptoms and the symptoms of household members. Guest participants may also report. ILI was defined as fever and sore throat or fever and cough. ILI rates were determined as the number of ILI reports over the total number of reports and assessed for the 2016-2017, 2017-2018, 2018-2019, 2019-2020, and 2020-2021 influenza seasons. Baseline season (2016-2017, 2017-2018, and 2018-2019) rates were compared to the 2019-2020 and 2020-2021 influenza seasons. Self-reported influenza diagnosis and vaccination status were captured and assessed as the total number of reported events over the total number of reports submitted. CIs for all proportions were calculated via a 1-sample test of proportions. RESULTS: ILI was detected in 3.8% (32,239/848,878) of participants in the baseline seasons (2016-2019), 2.58% (7418/287,909) in the 2019-2020 season, and 0.27% (546/201,079) in the 2020-2021 season. Both influenza seasons that overlapped with the COVID-19 pandemic had lower ILI rates than the baseline seasons. ILI decline was observed during the months with widespread implementation of COVID-19 precautions, starting in February 2020. Self-reported influenza diagnoses decreased from early 2020 through the influenza season. Self-reported influenza positivity among ILI cases varied over the observed time period. Self-reported influenza vaccination rates in FNY were high across all observed seasons. CONCLUSIONS: A decrease in ILI was detected in the crowdsourced FNY surveillance system during the 2019-2020 and 2020-2021 influenza seasons, mirroring trends observed in other influenza surveillance systems. Specifically, the months within seasons that overlapped with widespread pandemic precautions showed decreases in ILI and confirmed influenza. Concerns persist regarding respiratory pathogens re-emerging with changes to COVID-19 guidelines. Traditional surveillance is subject to changes in health care behaviors. Systems like FNY are uniquely situated to detect disease across disease severity and care seeking, providing key insights during public health emergencies.

Retrospective evaluation of real-time estimates of global COVID-19 transmission trends and mortality forecasts.

Since 8th March 2020 up to the time of writing, we have been producing near real-time weekly estimates of SARS-CoV-2 transmissibility and forecasts of deaths due to COVID-19 for all countries with evidence of sustained transmission, shared online. We also developed a novel heuristic to combine weekly estimates of transmissibility to produce forecasts over a 4-week horizon. Here we present a retrospective evaluation of the forecasts produced between 8th March to 29th November 2020 for 81 countries. We evaluated the robustness of the forecasts produced in real-time using relative error, coverage probability, and comparisons with null models. During the 39-week period covered by this study, both the short- and medium-term forecasts captured well the epidemic trajectory across different waves of COVID-19 infections with small relative errors over the forecast horizon. The model was well calibrated with 56.3% and 45.6% of the observations lying in the 50% Credible Interval in 1-week and 4-week ahead forecasts respectively. The retrospective evaluation of our models shows that simple transmission models calibrated using routine disease surveillance data can reliably capture the epidemic trajectory in multiple countries. The medium-term forecasts can be used in conjunction with the short-term forecasts of COVID-19 mortality as a useful planning tool as countries continue to relax public health measures.

Dissemination of information in event-based surveillance, a case study of Avian Influenza.

Event-Based Surveillance (EBS) tools, such as HealthMap and PADI-web, monitor online news reports and other unofficial sources, with the primary aim to provide timely information to users from health agencies on disease outbreaks occurring worldwide. In this work, we describe how outbreak-related information disseminates from a primary source, via a secondary source, to a definitive aggregator, an EBS tool, during the 2018/19 avian influenza season. We analysed 337 news items from the PADI-web and 115 news articles from HealthMap EBS tools reporting avian influenza outbreaks in birds worldwide between July 2018 and June 2019. We used the sources cited in the news to trace the path of each outbreak. We built a directed network with nodes representing the sources (characterised by type, specialisation, and geographical focus) and edges representing the flow of information. We calculated the degree as a centrality measure to determine the importance of the nodes in information dissemination. We analysed the role of the sources in early detection (detection of an event before its official notification) to the World Organisation for Animal Health (WOAH) and late detection. A total of 23% and 43% of the avian influenza outbreaks detected by the PADI-web and HealthMap, respectively, were shared on time before their notification. For both tools, national and local veterinary authorities were the primary sources of early detection. The early detection component mainly relied on the dissemination of nationally acknowledged events by online news and press agencies, bypassing international reporting to the WAOH. WOAH was the major secondary source for late detection, occupying a central position between national authorities and disseminator sources, such as online news. PADI-web and HealthMap were highly complementary in terms of detected sources, explaining why 90% of the events were detected by only one of the tools. We show that current EBS tools can provide timely outbreak-related information and priority news sources to improve digital disease surveillance.

Spatial modeling of vaccine deserts as barriers to controlling SARS-CoV-2.

BACKGROUND: COVID-19 vaccine distribution is at risk of further propagating the inequities of COVID-19, which in the United States (US) has disproportionately impacted the elderly, people of color, and the medically vulnerable. We sought to measure if the disparities seen in the geographic distribution of other COVID-19 healthcare resources were also present during the initial rollout of the COVID-19 vaccine. METHODS: Using a comprehensive COVID-19 vaccine database (VaccineFinder), we built an empirically parameterized spatial model of access to essential resources that incorporated vaccine supply, time-willing-to-travel for vaccination, and previous vaccination across the US. We then identified vaccine deserts-US Census tracts with localized, geographic barriers to vaccine-associated herd immunity. We link our model results with Census data and two high-resolution surveys to understand the distribution and determinates of spatially accessibility to the COVID-19 vaccine. RESULTS: We find that in early 2021, vaccine deserts were home to over 30 million people, >10% of the US population. Vaccine deserts were concentrated in rural locations and communities with a higher percentage of medically vulnerable populations. We also find that in locations of similar urbanicity, early vaccination distribution disadvantaged neighborhoods with more people of color and older aged residents. CONCLUSION: Given sufficient vaccine supply, data-driven vaccine distribution to vaccine deserts may improve immunization rates and help control COVID-19.

COVID-19 has affected the elderly, people of color, and individuals with chronic illnesses more than the general population. Large barriers to accessing the COVID-19 vaccine could make this problem worse. We used a website called VaccineFinder, which has information on the location of most COVID-19 vaccine doses in the US, to measure vaccine accessibility in early 2021. We then identified vaccine deserts, defined as small US regions with poor access to the COVID-19 vaccine. We found that over 10% of the US lived in a vaccine desert. Overall, we found that vaccines were less available to people in rural areas, people of color, and individuals with chronic illnesses. It will be important to reverse this pattern and ensure enough vaccines are sent to these communities to help reduce the spread of COVID-19.

Use of At-Home COVID-19 Tests - United States, August 23, 2021-March 12, 2022.

COVID-19 testing provides information regarding exposure and transmission risks, guides preventative measures (e.g., if and when to start and end isolation and quarantine), identifies opportunities for appropriate treatments, and helps assess disease prevalence (1). At-home rapid COVID-19 antigen tests (at-home tests) are a convenient and accessible alternative to laboratory-based diagnostic nucleic acid amplification tests (NAATs) for SARS-CoV-2, the virus that causes COVID-19 (2-4). With the emergence of the SARS-CoV-2 B.1.617.2 (Delta) and B.1.1.529 (Omicron) variants in 2021, demand for at-home tests increased† (5). At-home tests are commonly used for school- or employer-mandated testing and for confirmation of SARS-CoV-2 infection in a COVID-19-like illness or following exposure (6). Mandated COVID-19 reporting requirements omit at-home tests, and there are no standard processes for test takers or manufacturers to share results with appropriate health officials (2). Therefore, with increased COVID-19 at-home test use, laboratory-based reporting systems might increasingly underreport the actual incidence of infection. Data from a cross-sectional, nonprobability-based online survey (August 23, 2021-March 12, 2022) of U.S. adults aged ≥18 years were used to estimate self-reported at-home test use over time, and by demographic characteristics, geography, symptoms/syndromes, and reasons for testing. From the Delta-predominant period (August 23-December 11, 2021) to the Omicron-predominant period (December 19, 2021-March 12, 2022)§ (7), at-home test use among respondents with self-reported COVID-19-like illness¶ more than tripled from 5.7% to 20.1%. The two most commonly reported reasons for testing among persons who used an at-home test were COVID-19 exposure (39.4%) and COVID-19-like symptoms (28.9%). At-home test use differed by race (e.g., self-identified as White [5.9%] versus self-identified as Black [2.8%]), age (adults aged 30-39 years [6.4%] versus adults aged ≥75 years [3.6%]), household income (>$150,000 [9.5%] versus $50,000-$74,999 [4.7%]), education (postgraduate degree [8.4%] versus high school or less [3.5%]), and geography (New England division [9.6%] versus West South Central division [3.7%]). COVID-19 testing, including at-home tests, along with prevention measures, such as quarantine and isolation when warranted, wearing a well-fitted mask when recommended after a positive test or known exposure, and staying up to date with vaccination,** can help reduce the spread of COVID-19. Further, providing reliable and low-cost or free at-home test kits to underserved populations with otherwise limited access to COVID-19 testing could assist with continued prevention efforts.

Emerging Socioeconomic Disparities in COVID-19 Vaccine Second-Dose Completion Rates in the United States.

Although COVID-19 vaccination plans acknowledge a need for equity, disparities in two-dose vaccine initiation have been observed in the United States. We aim to assess if disparity patterns are emerging in COVID-19 vaccination completion. We gathered (n = 843,985) responses between February and November 2021 from a web survey. Individuals self-reported demographics and COVID-19 vaccination status. Dose initiation and completion rates were calculated incorporating survey weights. A multi-variate logistic regression assessed the association between income and completing vaccination, accounting for other demographics. Overall, 57.4% initiated COVID-19 vaccination, with 84.5% completing vaccination. Initiation varied by income, and we observed disparities in completion by occupation, race, age, and insurance. Accounting for demographics, higher incomes are more likely to complete vaccination than lower incomes. We observe disparities in completion across annual income. Differences in COVID-19 vaccination completion may lead to two tiers of protection in the population, with certain sub-groups being better protected from future infection.

Healthcare-Seeking Behavior for Respiratory Illness Among Flu Near You Participants in the United States During the 2015-2016 Through 2018-2019 Influenza Seasons.

BACKGROUND: Flu Near You (FNY) is an online participatory syndromic surveillance system that collects health-related information. In this article, we summarized the healthcare-seeking behavior of FNY participants who reported influenza-like illness (ILI) symptoms. METHODS: We applied inverse probability weighting to calculate age-adjusted estimates of the percentage of FNY participants in the United States who sought health care for ILI symptoms during the 2015-2016 through 2018-2019 influenza season and compared seasonal trends across different demographic and regional subgroups, including age group, sex, census region, and place of care using adjusted χ 2 tests. RESULTS: The overall age-adjusted percentage of FNY participants who sought healthcare for ILI symptoms varied by season and ranged from 22.8% to 35.6%. Across all seasons, healthcare seeking was highest for the <18 and 65+ years age groups, women had a greater percentage compared with men, and the South census region had the largest percentage while the West census region had the smallest percentage. CONCLUSIONS: The percentage of FNY participants who sought healthcare for ILI symptoms varied by season, geographical region, age group, and sex. FNY compliments existing surveillance systems and informs estimates of influenza-associated illness by adding important real-time insights into healthcare-seeking behavior.

Longitudinal Participatory Surveillance Highlights Association Between Mask-Wearing and Lower COVID-19 Risk - United States, 2020.

What is already known about this topic?: Numerous ecological and laboratory studies suggest face masks are an effective non-pharmaceutical intervention for reducing the spread of coronavirus disease 2019 (COVID-19), but cannot otherwise assess individual-level effects. What is added by this report?: Using a prospective cohort of individuals enrolled in a participatory, syndromic surveillance tool prior to the first case of COVID-19 in the United States, we present a novel longitudinal assessment of the effectiveness of face masks. What are the public health implications for public health practice?: Our analysis demonstrates an association between self-reported mask-wearing behavior and lower individual risk of syndromic COVID-19-like illness while adjusting for confounders at the individual level. Our results also highlight the dual utility of participatory syndromic surveillance systems as both disease trend monitors and tools that can aid in understanding the effectiveness of personal protective measures.

Evaluating an app-guided self-test for influenza: lessons learned for improving the feasibility of study designs to evaluate self-tests for respiratory viruses.

BACKGROUND: Seasonal influenza leads to significant morbidity and mortality. Rapid self-tests could improve access to influenza testing in community settings. We aimed to evaluate the diagnostic accuracy of a mobile app-guided influenza rapid self-test for adults with influenza like illness (ILI), and identify optimal methods for conducting accuracy studies for home-based assays for influenza and other respiratory viruses. METHODS: This cross-sectional study recruited adults who self-reported ILI online. Participants downloaded a mobile app, which guided them through two low nasal swab self-samples. Participants tested the index swab using a lateral flow assay. Test accuracy results were compared to the reference swab tested in a research laboratory for influenza A/B using a molecular assay. RESULTS: Analysis included 739 participants, 80% were 25-64 years of age, 79% female, and 73% white. Influenza positivity was 5.9% based on the laboratory reference test. Of those who started their test, 92% reported a self-test result. The sensitivity and specificity of participants' interpretation of the test result compared to the laboratory reference standard were 14% (95%CI 5-28%) and 90% (95%CI 87-92%), respectively. CONCLUSIONS: A mobile app facilitated study procedures to determine the accuracy of a home based test for influenza, however, test sensitivity was low. Recruiting individuals outside clinical settings who self-report ILI symptoms may lead to lower rates of influenza and/or less severe disease. Earlier identification of study subjects within 48 h of symptom onset through inclusion criteria and rapid shipping of tests or pre-positioning tests is needed to allow self-testing earlier in the course of illness, when viral load is higher.

Underrepresentation of Phenotypic Variability of 16p13.11 Microduplication Syndrome Assessed With an Online Self-Phenotyping Tool (Phenotypr): Cohort Study.

BACKGROUND: 16p13.11 microduplication syndrome has a variable presentation and is characterized primarily by neurodevelopmental and physical phenotypes resulting from copy number variation at chromosome 16p13.11. Given its variability, there may be features that have not yet been reported. The goal of this study was to use a patient "self-phenotyping" survey to collect data directly from patients to further characterize the phenotypes of 16p13.11 microduplication syndrome. OBJECTIVE: This study aimed to (1) discover self-identified phenotypes in 16p13.11 microduplication syndrome that have been underrepresented in the scientific literature and (2) demonstrate that self-phenotyping tools are valuable sources of data for the medical and scientific communities. METHODS: As part of a large study to compare and evaluate patient self-phenotyping surveys, an online survey tool, Phenotypr, was developed for patients with rare disorders to self-report phenotypes. Participants with 16p13.11 microduplication syndrome were recruited through the Boston Children's Hospital 16p13.11 Registry. Either the caregiver, parent, or legal guardian of an affected child or the affected person (if aged 18 years or above) completed the survey. Results were securely transferred to a Research Electronic Data Capture database and aggregated for analysis. RESULTS: A total of 19 participants enrolled in the study. Notably, among the 19 participants, aggression and anxiety were mentioned by 3 (16%) and 4 (21%) participants, respectively, which is an increase over the numbers in previously published literature. Additionally, among the 19 participants, 3 (16%) had asthma and 2 (11%) had other immunological disorders, both of which have not been previously described in the syndrome. CONCLUSIONS: Several phenotypes might be underrepresented in the previous 16p13.11 microduplication literature, and new possible phenotypes have been identified. Whenever possible, patients should continue to be referenced as a source of complete phenotyping data on their condition. Self-phenotyping may lead to a better understanding of the prevalence of phenotypes in genetic disorders and may identify previously unreported phenotypes.

Investigation of Geographic and Macrolevel Variations in LGBTQ Patient Experiences: Longitudinal Social Media Analysis.

BACKGROUND: Discrimination in the health care system contributes to worse health outcomes among lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients. OBJECTIVE: The aim of this study is to examine disparities in patient experience among LGBTQ persons using social media data. METHODS: We collected patient experience data from Twitter from February 2013 to February 2017 in the United States. We compared the sentiment of patient experience tweets between Twitter users who self-identified as LGBTQ and non-LGBTQ. The effect of state-level partisan identity on patient experience sentiment and differences between LGBTQ users and non-LGBTQ users were analyzed. RESULTS: We observed lower (more negative) patient experience sentiment among 13,689 LGBTQ users compared to 1,362,395 non-LGBTQ users. Increasing state-level liberal political identification was associated with higher patient experience sentiment among all users but had stronger effects for LGBTQ users. CONCLUSIONS: Our findings highlight that social media data can yield insights about patient experience for LGBTQ persons and suggest that a state-level sociopolitical environment influences patient experience for this group. Efforts are needed to reduce disparities in patient care for LGBTQ persons while taking into context the effect of the political climate on these inequities.

Racial and Ethnic Disparities in Patient Experiences in the United States: 4-Year Content Analysis of Twitter.

BACKGROUND: Racial and ethnic minority groups often face worse patient experiences compared with the general population, which is directly related to poorer health outcomes within these minority populations. Evaluation of patient experience among racial and ethnic minority groups has been difficult due to lack of representation in traditional health care surveys. OBJECTIVE: This study aims to assess the feasibility of Twitter for identifying racial and ethnic disparities in patient experience across the United States from 2013 to 2016. METHODS: In total, 851,973 patient experience tweets with geographic location information from the United States were collected from 2013 to 2016. Patient experience tweets included discussions related to care received in a hospital, urgent care, or any other health institution. Ordinary least squares multiple regression was used to model patient experience sentiment and racial and ethnic groups over the 2013 to 2016 period and in relation to the implementation of the Patient Protection and Affordable Care Act (ACA) in 2014. RESULTS: Racial and ethnic distribution of users on Twitter was highly correlated with population estimates from the United States Census Bureau's 5-year survey from 2016 (r2=0.99; P<.001). From 2013 to 2016, the average patient experience sentiment was highest for White patients, followed by Asian/Pacific Islander, Hispanic/Latino, and American Indian/Alaska Native patients. A reduction in negative patient experience sentiment on Twitter for all racial and ethnic groups was seen from 2013 to 2016. Twitter users who identified as Hispanic/Latino showed the greatest improvement in patient experience, with a 1.5 times greater increase (P<.001) than Twitter users who identified as White. Twitter users who identified as Black had the highest increase in patient experience postimplementation of the ACA (2014-2016) compared with preimplementation of the ACA (2013), and this change was 2.2 times (P<.001) greater than Twitter users who identified as White. CONCLUSIONS: The ACA mandated the implementation of the measurement of patient experience of care delivery. Considering that quality assessment of care is required, Twitter may offer the ability to monitor patient experiences across diverse racial and ethnic groups and inform the evaluation of health policies like the ACA.

Use of social media to assess the impact of equitable state policies on LGBTQ patient experiences: An exploratory study.

Limited research has evaluated these equitable policies because of the difficulty of capturing LGBTQ patient experience. Previous studies have shown that LGBTQ persons report increased rates of discrimination across a wide variety of healthcare settings which may prevent them from disclosing their LGBTQ status. The goal of this research was to use a social media big dataset to evaluate the impact of equitable policies on patient experiences for LGBTQ persons.

Epidemiological data from the COVID-19 outbreak, real-time case information.

Cases of a novel coronavirus were first reported in Wuhan, Hubei province, China, in December 2019 and have since spread across the world. Epidemiological studies have indicated human-to-human transmission in China and elsewhere. To aid the analysis and tracking of the COVID-19 epidemic we collected and curated individual-level data from national, provincial, and municipal health reports, as well as additional information from online reports. All data are geo-coded and, where available, include symptoms, key dates (date of onset, admission, and confirmation), and travel history. The generation of detailed, real-time, and robust data for emerging disease outbreaks is important and can help to generate robust evidence that will support and inform public health decision making.

Using Twitter to Examine Web-Based Patient Experience Sentiments in the United States: Longitudinal Study.

BACKGROUND: There are documented differences in access to health care across the United States. Previous research indicates that Web-based data regarding patient experiences and opinions of health care are available from Twitter. Sentiment analyses of Twitter data can be used to examine differences in patient views of health care across the United States. OBJECTIVE: The objective of our study was to provide a characterization of patient experience sentiments across the United States on Twitter over a 4-year period. METHODS: Using data from Twitter, we developed a set of 4 software components to automatically label and examine a database of tweets discussing patient experience. The set includes a classifier to determine patient experience tweets, a geolocation inference engine for social data, a modified sentiment classifier, and an engine to determine if the tweet is from a metropolitan or nonmetropolitan area in the United States. Using the information retrieved, we conducted spatial and temporal examinations of tweet sentiments at national and regional levels. We examined trends in the time of the day and that of the week when tweets were posted. Statistical analyses were conducted to determine if any differences existed between the discussions of patient experience in metropolitan and nonmetropolitan areas. RESULTS: We collected 27.3 million tweets between February 1, 2013 and February 28, 2017, using a set of patient experience-related keywords; the classifier was able to identify 2,759,257 tweets labeled as patient experience. We identified the approximate location of 31.76% (876,384/2,759,257) patient experience tweets using a geolocation classifier to conduct spatial analyses. At the national level, we observed 27.83% (243,903/876,384) positive patient experience tweets, 36.22% (317,445/876,384) neutral patient experience tweets, and 35.95% (315,036/876,384) negative patient experience tweets. There were slight differences in tweet sentiments across all regions of the United States during the 4-year study period. We found the average sentiment polarity shifted toward less negative over the study period across all the regions of the United States. We observed the sentiment of tweets to have a lower negative fraction during daytime hours, whereas the sentiment of tweets posted between 8 pm and 10 am had a higher negative fraction. Nationally, sentiment scores for tweets in metropolitan areas were found to be more extremely negative and mildly positive compared with tweets in nonmetropolitan areas. This result is statistically significant (P<.001). Tweets with extremely negative sentiments had a medium effect size (d=0.34) at the national level. CONCLUSIONS: This study presents methodologies for a deeper understanding of Web-based discussion related to patient experience across space and time and demonstrates how Twitter can provide a unique and unsolicited perspective from users on the health care they receive in the United States.

Investigating inequities in hospital care among lesbian, gay, bisexual, and transgender (LGBT) individuals using social media.

RATIONALE: Persons who identify as lesbian, gay, bisexual, and transgender (LGBT) face health inequities due to unwarranted discrimination against their sexual orientation or identity. An important contributor to LGBT health disparities is the inequitable or substandard care that LGBT individuals receive from hospitals. OBJECTIVE: To investigate inequities in hospital care among LGBT patients using the popular social media platform Twitter. METHOD: This study examined a dataset of Twitter communications (tweets) collected from February 2015 to May 2017. The tweets mentioned Twitter handles for hospitals (i.e., usernames for hospitals) and LGBT related terms. The topics discussed were explored to develop an LGBT position index referring to whether the hospital appears supportive or not supportive of LGBT rights. Results for each hospital were then compared to the Healthcare Equality Index (HEI), an established index to evaluate equity of hospital care towards LGBT patients. RESULTS: In total, 1856 tweets mentioned LGBT terms representing 653 unique hospitals. Of these hospitals, 189 (28.9%) were identified as HEI leaders. Hospitals in the Northeast showed significantly greater support towards LGBT issues compared to hospitals in the Midwest. Hospitals deemed as HEI leaders had higher LGBT position scores compared to non-HEI leaders (p = 0.042), when controlling for hospital size and location. CONCLUSIONS: This exploratory study describes a novel approach to monitoring LGBT hospital care. While these initial findings should be interpreted cautiously, they can potentially inform practices to improve equity of care and efforts to address health disparities among gender minority groups.