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.

Evaluation of Patients for Zika Virus Infection in a Travel Clinic in the Southeast United States, 2016.

OBJECTIVES: Zika virus is an emerging infection that has posed vexing challenges to the US public health system. Improved characterization of patients with possible and confirmed infection is needed to better understand risks for infection in US travelers and to inform evolving evaluation guidelines. METHODS: We performed a retrospective electronic health record review of patients evaluated for Zika virus infection at an academic travel clinic in Atlanta, Georgia, from January 1 through August 31, 2016. We evaluated 46 patients who presented to the clinic during this period for evaluation of possible Zika virus infection, including patients with Zika virus symptoms, asymptomatic patients with possible exposure to Zika virus, and referral visits for Zika virus testing. RESULTS: Among the 46 patients evaluated, 30 (65.2%) were tested for Zika virus, 8 of whom (17.4%) had laboratory evidence of infection (7 confirmed, 1 probable). Cases, including confirmed and probable infections, most commonly had fever, rash, conjunctivitis, headache, and myalgia, although differences compared with noncases were not statistically significant. Many patients evaluated were not tested because of stringent testing criteria. CONCLUSIONS: Our findings may help inform improvements in timely clinical decision making for Zika virus testing. This may assist clinicians and public health agencies. Wider access to accurate screening modalities will help providers evaluate and advise patients.

Prevalence of dementia subtypes in United States Medicare fee-for-service beneficiaries, 2011-2013.

INTRODUCTION: Rapid growth of the older adult population requires greater epidemiologic characterization of dementia. We developed national prevalence estimates of diagnosed dementia and subtypes in the highest risk United States (US) population. METHODS: We analyzed Centers for Medicare & Medicaid administrative enrollment and claims data for 100% of Medicare fee-for-service beneficiaries enrolled during 2011-2013 and age ≥68 years as of December 31, 2013 (n = 21.6 million). RESULTS: Over 3.1 million (14.4%) beneficiaries had a claim for a service and/or treatment for any dementia subtype. Dementia not otherwise specified was the most common diagnosis (present in 92.9%). The most common subtype was Alzheimer's (43.5%), followed by vascular (14.5%), Lewy body (5.4%), frontotemporal (1.0%), and alcohol induced (0.7%). The prevalence of other types of diagnosed dementia was 0.2%. DISCUSSION: This study is the first to document concurrent prevalence of primary dementia subtypes among this US population. The findings can assist in prioritizing dementia research, clinical services, and caregiving resources.

Prevention of chronic disease in the 21st century: elimination of the leading preventable causes of premature death and disability in the USA.

With non-communicable conditions accounting for nearly two-thirds of deaths worldwide, the emergence of chronic diseases as the predominant challenge to global health is undisputed. In the USA, chronic diseases are the main causes of poor health, disability, and death, and account for most of health-care expenditures. The chronic disease burden in the USA largely results from a short list of risk factors--including tobacco use, poor diet and physical inactivity (both strongly associated with obesity), excessive alcohol consumption, uncontrolled high blood pressure, and hyperlipidaemia--that can be effectively addressed for individuals and populations. Increases in the burden of chronic diseases are attributable to incidence and prevalence of leading chronic conditions and risk factors (which occur individually and in combination), and population demographics, including ageing and health disparities. To effectively and equitably address the chronic disease burden, public health and health-care systems need to deploy integrated approaches that bundle strategies and interventions, address many risk factors and conditions simultaneously, create population-wide changes, help the population subgroups most affected, and rely on implementation by many sectors, including public-private partnerships and involvement from all stakeholders. To help to meet the chronic disease burden, the US Centers for Disease Control and Prevention (CDC) uses four cross-cutting strategies: (1) epidemiology and surveillance to monitor trends and inform programmes; (2) environmental approaches that promote health and support healthy behaviours; (3) health system interventions to improve the effective use of clinical and other preventive services; and (4) community resources linked to clinical services that sustain improved management of chronic conditions. Establishment of community conditions to support healthy behaviours and promote effective management of chronic conditions will deliver healthier students to schools, healthier workers to employers and businesses, and a healthier population to the health-care system. Collectively, these four strategies will prevent the occurrence of chronic diseases, foster early detection and slow disease progression in people with chronic conditions, reduce complications, support an improved quality of life, and reduce demand on the health-care system. Of crucial importance, with strengthened collaboration between the public health and health-care sectors, the health-care system better uses prevention and early detection services, and population health is improved and sustained by solidifying collaborations between communities and health-care providers. This collaborative approach will improve health equity by building communities that promote health rather than disease, have more accessible and direct care, and focus the health-care system on improving population health.

What is "community health"? Examining the meaning of an evolving field in public health.

In this commentary, we review definition frameworks for community health and examine factors having core relevance to shaping the meaning of this term and growing field. We conclude by suggesting a potential framework for conceptualizing and advancing this field of public health practice through improved understanding of the meaning, scope, and science of community health.

IOM and DHHS meeting on making clinical practice guidelines appropriate for patients with multiple chronic conditions.

BACKGROUND: The increasing prevalence of Americans with multiple (2 or more) chronic conditions raises concerns about the appropriateness and applicability of clinical practice guidelines for patient management. Most guidelines clinicians currently rely on have been designed with a single chronic condition in mind, and many such guidelines are inattentive to issues related to comorbidities. PURPOSE: In response to the need for guideline developers to address comorbidities in guidelines, the Department of Health and Human Services convened a meeting in May 2012 in partnership with the Institute of Medicine to identify principles and action options. RESULTS: Eleven principles to improve guidelines' attentiveness to the population with multiple chronic conditions were identified during the meeting. They are grouped into 3 interrelated categories: (1) principles intended to improve the stakeholder technical process for developing guidelines; (2) principles intended to strengthen content of guidelines in terms of multiple chronic conditions; and (3) principles intended to increase focus on patient-centered care. CONCLUSION: This meeting built upon previously recommended actions by identifying additional principles and options for government, guideline developers, and others to use in strengthening the applicability of clinical practice guidelines to the growing population of people with multiple chronic conditions. The suggested principles are helping professional societies to improve guidelines' attentiveness to persons with multiple chronic conditions.

Understanding the context of health for persons with multiple chronic conditions: moving from what is the matter to what matters.

PURPOSE: An isolated focus on 1 disease at a time is insufficient to generate the scientific evidence needed to improve the health of persons living with more than 1 chronic condition. This article explores how to bring context into research efforts to improve the health of persons living with multiple chronic conditions (MCC). METHODS: Forty-five experts, including persons with MCC, family and friend caregivers, researchers, policy makers, funders, and clinicians met to critically consider 4 aspects of incorporating context into research on MCC: key contextual factors, needed research, essential research methods for understanding important contextual factors, and necessary partnerships for catalyzing collaborative action in conducting and applying research. RESULTS: Key contextual factors involve complementary perspectives across multiple levels: public policy, community, health care systems, family, and person, as well as the cellular and molecular levels where most research currently is focused. Needed research involves moving from a disease focus toward a person-driven, goal-directed research agenda. Relevant research methods are participatory, flexible, multilevel, quantitative and qualitative, conducive to longitudinal dynamic measurement from diverse data sources, sufficiently detailed to consider what works for whom in which situation, and generative of ongoing communities of learning, living and practice. Important partnerships for collaborative action include cooperation among members of the research enterprise, health care providers, community-based support, persons with MCC and their family and friend caregivers, policy makers, and payers, including government, public health, philanthropic organizations, and the business community. CONCLUSION: Consistent attention to contextual factors is needed to enhance health research for persons with MCC. Rigorous, integrated, participatory, multimethod approaches to generate new knowledge and diverse partnerships can be used to increase the relevance of research to make health care more sustainable, safe, equitable and effective, to reduce suffering, and to improve quality of life.

Multiple chronic conditions among US adults: a 2012 update.

The objective of this research was to update earlier estimates of prevalence rates of single chronic conditions and multiple (>2) chronic conditions (MCC) among the noninstitutionalized, civilian US adult population. Data from the 2012 National Health Interview Survey (NHIS) were used to generate estimates of MCC for US adults and by select demographic characteristics. Approximately half (117 million) of US adults have at least one of the 10 chronic conditions examined (ie, hypertension, coronary heart disease, stroke, diabetes, cancer, arthritis, hepatitis, weak or failing kidneys, current asthma, or chronic obstructive pulmonary disease [COPD]). Furthermore, 1 in 4 adults has MCC.

Co-occurrence of leading lifestyle-related chronic conditions among adults in the United States, 2002-2009.

INTRODUCTION: Public health and clinical strategies for meeting the emerging challenges of multiple chronic conditions must address the high prevalence of lifestyle-related causes. Our objective was to assess prevalence and trends in the chronic conditions that are leading causes of disease and death among adults in the United States that are amenable to preventive lifestyle interventions. METHODS: We used self-reported data from 196,240 adults aged 25 years or older who participated in the National Health Interview Surveys from 2002 to 2009. We included data on cardiovascular disease (coronary heart disease, angina pectoris, heart attack, and stroke), cancer, chronic obstructive pulmonary disease (emphysema and chronic bronchitis), diabetes, and arthritis. RESULTS: In 2002, an unadjusted 63.6% of participants did not have any of the 5 chronic conditions we assessed; 23.9% had 1, 9.0% had 2, 2.9% had 3, and 0.7% had 4 or 5. By 2009, the distribution of co-occurrence of the 5 chronic conditions had shifted subtly but significantly. From 2002 to 2009, the age-adjusted percentage with 2 or more chronic conditions increased from 12.7% to 14.7% (P < .001), and the number of adults with 2 or more conditions increased from approximately 23.4 million to 30.9 million. CONCLUSION: The prevalence of having 1 or more or 2 or more of the leading lifestyle-related chronic conditions increased steadily from 2002 to 2009. If these increases continue, particularly among younger adults, managing patients with multiple chronic conditions in the aging population will continue to challenge public health and clinical practice.

Defining and measuring chronic conditions: imperatives for research, policy, program, and practice.

Current trends in US population growth, age distribution, and disease dynamics foretell rises in the prevalence of chronic diseases and other chronic conditions. These trends include the rapidly growing population of older adults, the increasing life expectancy associated with advances in public health and clinical medicine, the persistently high prevalence of some risk factors, and the emerging high prevalence of multiple chronic conditions. Although preventing and mitigating the effect of chronic conditions requires sufficient measurement capacities, such measurement has been constrained by lack of consistency in definitions and diagnostic classification schemes and by heterogeneity in data systems and methods of data collection. We outline a conceptual model for improving understanding of and standardizing approaches to defining, identifying, and using information about chronic conditions in the United States. We illustrate this model's operation by applying a standard classification scheme for chronic conditions to 5 national-level data systems. Although the literature does not support a single uniform definition for chronic disease, recurrent themes include the non-self-limited nature, the association with persistent and recurring health problems, and a duration measured in months and years, not days and weeks--Thrall. So far, many different approaches have been used to measure the prevalence and consequences of chronic diseases and health conditions in children, resulting in a wide variability of prevalence estimates that cannot be readily compared--van der Lee et al.

Investigations of selected historically important syndromic outbreaks: impact and lessons learned for public health preparedness and response.

Public health readiness has increased at all jurisdictional levels because of increased sensitivity to threats. Since 2001, with billions of dollars invested to bolster the public health system's capacity, the public expects that public health will identify the etiology of and respond to events more rapidly. However, when etiologies are unknown at the onset of the investigation but interventions must be implemented, public health practitioners must benefit from past investigations' lessons to strengthen preparedness for emerging threats. We have identified such potentially actionable lessons learned from historically important public health events that occurred primarily as syndromes for which the etiological agent initially was unknown. Ongoing analysis of investigations can advance our capability to recognize and investigate syndromes and other problems and implement the most appropriate interventions.

Managing multiple chronic conditions: a strategic framework for improving health outcomes and quality of life.

The escalating problem of multiple chronic conditions (MCC) among Americans is now a major public health and medical challenge, associated with suboptimal health outcomes and rising health-care expenses. Despite this problem's growth, the delivery of health services has continued to employ outmoded "siloed" approaches that focus on individual chronic diseases. We describe an action-oriented framework--developed by the U.S. Department of Health and Human Services with additional input provided by stakeholder organizations--that outlines national strategies for maximizing care coordination and for improving health and quality of life for individuals with MCC. We note how the framework's potential can be optimized through some of the provisions of the new Patient Protection and Affordable Care Act, and through public-private partnerships.

The scientific basis for law as a public health tool.

Systematic reviews are generating valuable scientific knowledge about the impact of public health laws, but this knowledge is not readily accessible to policy makers. We identified 65 systematic reviews of studies on the effectiveness of 52 public health laws: 27 of those laws were found effective, 23 had insufficient evidence to judge effectiveness, 1 was harmful, and 1 was found to be ineffective. This is a valuable, scientific foundation-that uses the highest relevant standard of evidence-for the role of law as a public health tool. Additional primary studies and systematic reviews are needed to address significant gaps in knowledge about the laws' public health impact, as are energetic, sustained initiatives to make the findings available to public policy makers.

Cancer Risk Among Older Adults: Time for Cancer Prevention to Go Silver.

Over two-thirds of all new cancers are diagnosed among adults aged ≥60 years. As the number of adults living to older ages continues to increase, so too will the number of new cancer cases. Can we do more as a society to reduce cancer risk and preserve health as adults enter their 60s, 70s, and beyond? Cancer development is a multi-step process involving a combination of factors. Each cancer risk factor represents a component of cancer causation, and opportunities to prevent cancer may exist at any time up to the final component, even years after the first. The characteristics of the community in which one lives often shape cancer risk-related behaviors and exposures over time, making communities an ideal setting for efforts to reduce cancer risk at a population level. A comprehensive approach to cancer prevention at older ages would lower exposures to known causes of cancer, promote healthy social and physical environments, expand the appropriate use of clinical preventive services, and engage older adults in these efforts. The collection of articles in this supplement provide innovative insights for exciting new directions in research and practice to expand cancer prevention efforts for older adults. This brief commentary sets the stage for the papers that follow.