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Over the past 20 years, the National Institutes for Health (NIH) has implemented several policies designed to improve sharing of research data, such as the NIH public access policy for publications, NIH genomic data sharing policy, and National Cancer Institute (NCI) Cancer Moonshot public access and data sharing policy. In January 2023, a new NIH data sharing policy has gone into effect, requiring researchers to submit a Data Management and Sharing Plan in proposals for NIH funding (NIH. Supplemental information to the, 2020b; NIH. Final policy for data, 2020a). These policies are based on the idea that sharing data is a key component of the scientific method, as it enables the creation of larger data repositories that can lead to research questions that may not be possible in individual studies (Alter and Gonzalez, 2018; Jwa and Poldrack, 2022), allows enhanced collaboration, and maximizes the federal investment in research. Important questions that we must consider as data sharing is expanded are to whom do benefits of data sharing accrue and to whom do benefits not accrue? In an era of growing efforts to engage diverse communities in research, we must consider the impact of data sharing for all research participants and the communities that they represent. We examine the issue of data sharing through a community-engaged research lens, informed by a long-standing partnership between community-engaged researchers and a key community health organization (Kruse et al., 2022). We contend that without effective community engagement and rich contextual knowledge, biases resulting from data sharing can remain unchecked. We provide several recommendations that would allow better community engagement related to data sharing to ensure both community and researcher understanding of the issues involved and move toward shared benefits. By identifying good models for evaluating the impact of data sharing on communities that contribute data, and then using those models systematically, we will advance the consideration of the community perspective and increase the likelihood of benefits for all.
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Genómica , Difusión de la Información , Humanos , Difusión de la Información/métodos , Políticas , Salud Pública , InvestigadoresRESUMEN
Automated analysis of electronic health record (EHR) data is a complementary tool for public health surveillance. Analyzing and presenting these data, however, demands new methods of data communication optimized to the detail, flexibility, and timeliness of EHR data.RiskScape is an open-source, interactive, Web-based, user-friendly data aggregation and visualization platform for public health surveillance using EHR data. RiskScape displays near-real-time surveillance data and enables clinical practices and health departments to review, analyze, map, and trend aggregate data on chronic conditions and infectious diseases. Data presentations include heat maps of prevalence by zip code, time series with statistics for trends, and care cascades for conditions such as HIV and HCV. The platform's flexibility enables it to be modified to incorporate new conditions quickly-such as COVID-19.The Massachusetts Department of Public Health (MDPH) uses RiskScape to monitor conditions of interest using data that are updated monthly from clinical practice groups that cover approximately 20% of the state population. RiskScape serves an essential role in demonstrating need and burden for MDPH's applications for funding, particularly through the identification of inequitably burdened populations.
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COVID-19/epidemiología , Registros Electrónicos de Salud/estadística & datos numéricos , Informática en Salud Pública/instrumentación , Vigilancia en Salud Pública/métodos , Humanos , MassachusettsRESUMEN
BACKGROUND: Gonorrhea diagnosis rates in the United States increased by 75% during 2009-2017, predominantly in men. It is unclear whether the increase among men is being driven by more screening, an increase in the prevalence of disease, or both. We sought to evaluate changes in gonorrhea testing patterns and positivity among men in Massachusetts. METHODS: The analysis included men (aged ≥15 years) who received care during 2010-2017 in 3 clinical practice groups. We calculated annual percentages of men with ≥1 gonorrhea test and men with ≥1 positive result, among men tested. Log-binomial regression models were used to examine trends in these outcomes. We adjusted for clinical and demographic characteristics that may influence the predilection to test and probability of gonorrhea disease. RESULTS: On average, 306 348 men had clinical encounters each year. There was a significant increase in men with ≥1 gonorrhea test from 2010 (3.1%) to 2017 (6.4%; adjusted annual risk ratio, 1.12; 95% confidence interval, 1.12-1.13). There was a significant, albeit lesser, increase in the percentage of tested men with ≥1 positive result (1.0% in 2010 to 1.5% in 2017; adjusted annual risk ratio, 1.07; 95% confidence interval, 1.04-1.09). CONCLUSIONS: We estimated significant increases in the annual percentages of men with ≥1 gonorrhea test and men with ≥1 positive gonorrhea test result between 2010 and 2017. These results suggest that observed increases in gonorrhea rates could be explained by both increases in screening and the prevalence of gonorrhea.
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Infecciones por Chlamydia , Gonorrea , Anciano , Gonorrea/diagnóstico , Gonorrea/epidemiología , Homosexualidad Masculina , Humanos , Masculino , Tamizaje Masivo , Massachusetts/epidemiología , Prevalencia , Estados Unidos/epidemiologíaRESUMEN
INTRODUCTION: National guidelines recommend test-of-cure for pregnant women and test-of-reinfection for all patients with chlamydia infections in order to interrupt transmission and prevent adverse sequelae for patients, partners, and newborns. Little is known about retesting and positivity rates, and whether they are changing over time, particularly in private sector practices. METHODS: Electronic health record data on patients with chlamydia tests were extracted from three independent clinical practice groups serving â 20% of the Massachusetts population. Records were extracted using the Electronic medical record Support for Public Health platform (esphealth.org). These data were analyzed for temporal trends in annual repeat testing rates by using generalized estimating equations after index positive chlamydia tests between 2010 and 2015 and for differences in intervals to first repeat tests among pregnant females, non-pregnant females, and males. Data extraction and analysis were performed during calendar years 2017 and 2018. RESULTS: An index positive C. trachomatis result was identified for 972 pregnant female cases, 10,309 non-pregnant female cases, and 4,973 male cases. Test-of-cure 3-5 weeks after an index positive test occurred in 37% of pregnant females. Test-of-reinfection 8-16 weeks after an index positive test occurred in 39% of pregnant females, 18% of non-pregnant females, and 9% of males. There were no significant increases in test-of-cure or test-of-reinfection rates from 2010 to 2015. Among cases with repeat tests, 16% of pregnant females, 15% of non-pregnant females, and 16% of males had positive results. CONCLUSIONS: Chlamydia test-of-cure and test-of-reinfection rates are low, with no evidence of improvement over time. There are substantial opportunities to improve adherence to chlamydia repeat testing recommendations.
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Infecciones por Chlamydia/diagnóstico , Infecciones por Chlamydia/epidemiología , Tamizaje Masivo/métodos , Tamizaje Masivo/estadística & datos numéricos , Cooperación del Paciente/estadística & datos numéricos , Registros Electrónicos de Salud , Femenino , Humanos , Masculino , Massachusetts/epidemiología , Aceptación de la Atención de Salud , Embarazo , Parejas Sexuales , Factores de TiempoRESUMEN
OBJECTIVES: To assess the feasibility of chronic disease surveillance using distributed analysis of electronic health records and to compare results with Behavioral Risk Factor Surveillance System (BRFSS) state and small-area estimates. METHODS: We queried the electronic health records of 3 independent Massachusetts-based practice groups using a distributed analysis tool called MDPHnet to measure the prevalence of diabetes, asthma, smoking, hypertension, and obesity in adults for the state and 13 cities. We adjusted observed rates for age, gender, and race/ethnicity relative to census data and compared them with BRFSS state and small-area estimates. RESULTS: The MDPHnet population under surveillance included 1 073 545 adults (21.8% of the state adult population). MDPHnet and BRFSS state-level estimates were similar: 9.4% versus 9.7% for diabetes, 10.0% versus 12.0% for asthma, 13.5% versus 14.7% for smoking, 26.3% versus 29.6% for hypertension, and 22.8% versus 23.8% for obesity. Correlation coefficients for MDPHnet versus BRFSS small-area estimates ranged from 0.890 for diabetes to 0.646 for obesity. CONCLUSIONS: Chronic disease surveillance using electronic health record data is feasible and generates estimates comparable with BRFSS state and small-area estimates.