Life in Data Sets: Locating and Accessing Data on the Health of Americans Across the Life Span.

CONTEXT: The US government manages a large number of data sets, including federally funded data collection activities that examine infectious and chronic conditions, as well as risk and protective factors for adverse health outcomes. Although there currently is no mature, comprehensive metadata repository of existing data sets, US federal agencies are working to develop and make metadata repositories available that will improve discoverability. However, because these repositories are not yet operating at full capacity, researchers must rely on their own knowledge of the field to identify available data sets. PROGRAM OR POLICY: We sought to identify and consolidate a practical and annotated listing of those data sets. IMPLEMENTATION AND/OR DISSEMINATION: Creative use of data resources to address novel questions is an important research skill in a wide range of fields including public health. This report identifies, promotes, and encourages the use of a range of data sources for health, behavior, economic, and policy research efforts across the life span. EVALUATION: We identified and organized 28 federal data sets by the age-group of primary focus; not all groups are mutually exclusive. These data sets collectively represent a rich source of information that can be used to conduct descriptive epidemiologic studies. DISCUSSION: The data sets identified in this article are not intended to represent an exhaustive list of all available data sets. Rather, we present an introduction/overview of the current federal data collection landscape and some of its largest and most frequently utilized data sets.

Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study.

The study objective was to identify communication messages that parents of children diagnosed with congenital cytomegalovirus (cCMV) infection reported as essential and helpful. We performed a secondary analysis of focus groups and interviews conducted with 41 parents of children with cCMV who had enrolled in a long-term follow-up cCMV study at an academic medical center. Three groups of parents who had children with cCMV participated in the study: parents with children symptomatic at birth, parents with children asymptomatic at birth who later developed sensorineural hearing loss, and parents with children asymptomatic at birth who remained asymptomatic into adulthood. Using a health marketing approach, we identified six general themes from the focus group sessions: initial diagnosis, likely health outcome(s), comfort and coping, symptom watch, resources, and prevention. Receiving the initial diagnosis was shocking for many parents, and they wanted to know how their child would or could be affected. They valued access to the information, follow-up visits for early detection of hearing loss and other developmental delays, and support from other parents. Parents wished to obtain this information from their pediatrician but felt that experts offered more up-to-date knowledge about prognosis, monitoring, and treatment. With more U.S. states implementing cCMV screening strategies which would lead to more infant diagnoses, it will be necessary for providers to meet parents' expectations and communication needs.

Challenges with hepatitis B vaccination of high risk adults - A pilot program.

BACKGROUND: Acute hepatitis B virus (HBV) infections in the United States occur predominantly among persons aged 30-59 years. The Centers for Disease Control and Prevention (CDC) recommends vaccination of adults at increased risk for HBV infection. Completing the hepatitis B (HepB) vaccine dose-series is critical for optimal immune response. OBJECTIVES: CDC funded 14 health departments (awardees) from 2012 to 2015 to implement a pilot HepB vaccination program for high-risk adults. We evaluated the pilot program to assess vaccine utilization; vaccine dose-series completion, including by vaccination location type; and implementation challenges. METHODS: Awardees collaborated with sites providing health care to persons at increased risk for HBV infection. Awardees collected information on doses administered, vaccine dose-series completion, and challenges completing and tracking vaccinations, including use of immunization information systems (IIS). Data were reported by each awardee in aggregate to CDC. RESULTS: Six of 14 awardees administered 47,911 doses and were able to report patient-level dose-series completion. Among persons who received dose 1, 40.4% received dose 2, and 22.3% received dose 3. Local health department clinics had the highest 3-dose-series completion, 60.6% (531/876), followed by federally qualified health centers at 38.0% (923/2432). While sexually transmitted diseases (STD) clinics administered the most doses in total (17,173 [35.8% of 47,911 doses]), 3-dose-series completion was low (17.1%). The 14 awardees reported challenges regarding completing and tracking dose-series, including reaching high-risk adults for follow-up and inconsistencies in use of IIS or other tracking systems across sites. CONCLUSIONS: Dose-series completion was low in all settings, but lowest where patients may be less likely to return for follow-up (e.g., STD clinics). Routinely assessing HepB vaccination needs of high-risk adults, including through use of IIS where available, may facilitate HepB vaccine dose-series completion.

Promoting brain health for African Americans: evaluating the healthy brain initiative, a community-level demonstration project.

INTRODUCTION: African Americans are at significantly greater risk than non-Hispanic Whites or Hispanics for cognitive impairment. This study presents an evaluation of the Alzheimer's Association's Healthy Brain Initiative, a culturally tailored community-level intervention to increase knowledge and awareness of brain health among African American baby boomers. METHODS: The evaluation used a mixed-method design with data collection before, during, and after intervention implementation. RESULTS: The intervention was implemented with fidelity to model design by Alzheimer's Association chapters. Partnerships between chapters and community organizations to increase awareness of brain health among African American baby boomers were facilitated. Community members who participated in intervention workshops demonstrated increased knowledge, awareness, and intentions to engage in recommended health-protective behaviors. CONCLUSION: A community-level intervention can increase knowledge and awareness of brain health among African American baby boomers. In addition, such interventions can motivate participants' intentions to engage in health-protective behaviors to maintain overall health and brain health.