Principles for Health Information Collection, Sharing, and Use: A Policy Statement From the American Heart Association.

The evolution of the electronic health record, combined with advances in data curation and analytic technologies, increasingly enables data sharing and harmonization. Advances in the analysis of health-related and health-proxy information have already accelerated research discoveries and improved patient care. This American Heart Association policy statement discusses how broad data sharing can be an enabling driver of progress by providing data to develop, test, and benchmark innovative methods, scalable insights, and potential new paradigms for data storage and workflow. Along with these advances come concerns about the sensitive nature of some health data, equity considerations about the involvement of historically excluded communities, and the complex intersection of laws attempting to govern behavior. Data-sharing principles are therefore necessary across a wide swath of entities, including parties who collect health information, funders, researchers, patients, legislatures, commercial companies, and regulatory departments and agencies. This policy statement outlines some of the key equity and legal background relevant to health data sharing and responsible management. It then articulates principles that will guide the American Heart Association's engagement in public policy related to data collection, sharing, and use to continue to inform its work across the research enterprise, as well as specific examples of how these principles might be applied in the policy landscape. The goal of these principles is to improve policy to support the use or reuse of health information in ways that are respectful of patients and research participants, equitable in impact in terms of both risks and potential benefits, and beneficial across broad and demographically diverse communities in the United States.

Community-Level Economic Distress, Race, and Risk of Adverse Outcomes After Heart Failure Hospitalization Among Medicare Beneficiaries.

BACKGROUND: Socioeconomic disadvantage is a strong determinant of adverse outcomes in patients with heart failure. However, the contribution of community-level economic distress to adverse outcomes in heart failure may differ across races and ethnicities. METHODS: Patients of self-reported Black, White, and Hispanic race and ethnicity hospitalized with heart failure between 2014 and 2019 were identified from the Medicare MedPAR Part A 100% Files. We used patient-level residential ZIP code to quantify community-level economic distress on the basis of the Distressed Community Index (quintile 5: economically distressed versus quintiles 1-4: nondistressed). The association of continuous and categorical measures (distressed versus nondistressed) of Distressed Community Index with 30-day, 6-month, and 1-year risk-adjusted mortality, readmission burden, and home time were assessed separately by race and ethnicity groups. RESULTS: The study included 1 611 586 White (13.2% economically distressed), 205 840 Black (50.6% economically distressed), and 89 199 Hispanic (27.3% economically distressed) patients. Among White patients, living in economically distressed (versus nondistressed) communities was significantly associated with a higher risk of adverse outcomes at 30-day and 1-year follow-up. Among Black and Hispanic patients, the risk of adverse outcomes associated with living in distressed versus nondistressed communities was not meaningfully different at 30 days and became more prominent by 1-year follow-up. Similarly, in the restricted cubic spline analysis, a stronger and more graded association was observed between Distressed Community Index score and risk of adverse outcomes in White patients (versus Black and Hispanic patients). Furthermore, the association between community-level economic distress and risk of adverse outcomes for Black patients differed in rural versus urban areas. Living in economically distressed communities was significantly associated with a higher risk of mortality and lower home time at 1-year follow-up in rural areas but not urban areas. CONCLUSIONS: The association between community-level economic distress and risk of adverse outcomes differs across race and ethnic groups, with a stronger association noted in White patients at short- and long-term follow-up. Among Black patients, the association of community-level economic distress with a higher risk of adverse outcomes is less evident in the short term and is more robust and significant in the long-term follow-up and rural areas.

The Role of Government in Precision Medicine, Precision Public Health and the Intersection With Healthy Living.

This paper focuses on the significant role of government in promoting precision medicine and public health and the potential intersection with healthy living (HL) and population health. Recent research has highlighted the interplay between genes, environments and different exposures individuals and populations experience over a lifetime. These interactions between longitudinal behaviors, epigenetics, and expression of the human genome have the potential to transform health and well-being, even within a single generation. Precision medicine can elucidate these longitudinal interactions with a granularity that has not been previously possible across the exposome. Understanding the interactions between genes, epigenetics, proteins, metabolites, and the exposome may inform more evidence-based, effective policy, system, and environmental change to optimize individual and population health. Government has an important role in helping to fund primary research in precision medicine and precision public health, as well as creating and enforcing standards related to food systems, air quality, and access to health care, defining and optimizing measures of health care quality and safety, and ensuring data privacy standards and protections, interoperability, and integration with surveillance systems. Government partnership and collaboration with the non-profit and private sectors can optimize precision medicine and precision public health for the benefit of the United States and global population.

Workforce Characteristics and Attitudes Regarding Participation in Worksite Wellness Programs.

PURPOSE: To estimate workforce participation characteristics and employees' attitudes regarding participation in workplace wellness programs. DESIGN: Data from a statewide stratified random sample were used to compare small (<50 employees) and larger (50+ employees) workplaces to estimate participation in screening programs and likelihood of participation in workplace wellness programs. SETTING: A telephone survey of employed Iowans registered to vote. SUBJECTS: Surveyed were 1171 employed Iowans registered to vote, ages 18 to 65. MEASURE: Among questionnaire survey modules were items from the Wellness Council of America Employee Needs and Interest Survey, the U.S. Census Bureau for employment documentation, and the World Health Organization Health and Work Performance Questionnaire for assessment of sickness absenteeism and presenteeism. ANALYSIS: Prevalence of participation in screening and wellness programs was analyzed by employment size and levels of likeliness to participate, and multivariable analyses of employee baseline characteristics regarding participation in screening programs and likelihood of participation in wellness programs was presented as top and bottom quartiles. RESULTS: Those employed in smaller workplaces participated less often in screening programs. Multivariable models identified male gender and those with an abnormal body mass index were associated with nonparticipation, while having a primary care physician was associated with participation. Very few items showed significant statistical difference in willingness to participate. CONCLUSION: Workforce characteristics and access to health care may influence participation in screening and wellness programs. Employment size is not a determining factor for willingness to participate in wellness programs.

Future translational applications from the contemporary genomics era: a scientific statement from the American Heart Association.

The field of genetics and genomics has advanced considerably with the achievement of recent milestones encompassing the identification of many loci for cardiovascular disease and variable drug responses. Despite this achievement, a gap exists in the understanding and advancement to meaningful translation that directly affects disease prevention and clinical care. The purpose of this scientific statement is to address the gap between genetic discoveries and their practical application to cardiovascular clinical care. In brief, this scientific statement assesses the current timeline for effective translation of basic discoveries to clinical advances, highlighting past successes. Current discoveries in the area of genetics and genomics are covered next, followed by future expectations, tools, and competencies for achieving the goal of improving clinical care.

Employment status matters: a statewide survey of quality-of-life, prevention behaviors, and absenteeism and presenteeism.

OBJECTIVE: To estimate quality-of-life (QoL), primary care, health insurance, prevention behaviors, absenteeism, and presenteeism in a statewide sample of the unemployed, self-employed, and organizationally employed. METHODS: A statewide survey of 1602 Iowans included items from the Centers for Disease Control and Prevention QoL and Behavioral Risk Factor Surveillance System Survey prevention behavior questionnaires used to assess employee well-being; their indicator results are related to World Health Organization's Health and Work Performance Questionnaire-derived absenteeism and presenteeism scores. RESULTS: The unemployed exhibited poorer QoL and prevention behaviors; the self-employed exhibited many better QoL scores due largely to better prevention behaviors than those employed by organizations. Higher QoL measures and more prevention behaviors are associated with lower absenteeism and lower presenteeism. CONCLUSIONS: Employment status is related to measures of well-being, which are also associated with absenteeism and presenteeism.

An employee total health management-based survey of Iowa employers.

OBJECTIVE: To implement an Employee Total Health Management (ETHM) model-based questionnaire and provide estimates of model program elements among a statewide sample of Iowa employers. METHODS: Survey a stratified random sample of Iowa employers, and characterize and estimate employer participation in ETHM program elements. RESULTS: Iowa employers are implementing less than 30% of all 12 components of ETHM, with the exception of occupational safety and health (46.6%) and workers' compensation insurance coverage (89.2%), but intend modest expansion of all components in the coming year. CONCLUSIONS: The ETHM questionnaire-based survey provides estimates of progress Iowa employers are making toward implementing components of Total Worker Health programs.

Translating clinical research to the bedside: the Minnesota model.

Minnesota is home to two of the pioneering institutions that ushered in the golden era of modern cardiac surgery. Clinicians and researchers at the Mayo Clinic and the University of Minnesota built on this momentum and began translating clinical research directly to the bedside. This legacy continues today. Minnesota has a rich history and track record of translating clinical research to the bedside and developing medical device companies that have benefited investigators, patients, and the economy. We will give a brief overview of this model and the steps to success which can be duplicated by other states and countries.

Cost of influenza hospitalization at a tertiary care children's hospital and its impact on the cost-benefit analysis of the recommendation for universal influenza immunization in children age 6 to 23 months.

OBJECTIVE: To calculate the costs of influenza hospitalization at a tertiary care children's hospital as the basis of a cost-benefit analysis of the new influenza vaccine recommendation for children age 6 to 23 months. STUDY DESIGN: We reviewed the medical records of all patients admitted to Children's Memorial Hospital (CMH) in 2002 diagnosed with influenza. Total hospital costs were obtained from the Business Development Office. RESULTS: Thirty-five charts were analyzed. Both of the 2 patients requiring mechanical ventilation and 4 of 6 patients admitted to the intensive care unit had high-risk underlying medical conditions. Nine children were age 6 to 23 months; 4 of these 9 had no preexisting medical conditions. Had all 18 high-risk children over age 6 months been protected from influenza, approximately $350,000 in hospital charges could have been saved. CONCLUSIONS: Preventing the additional 4 hospitalizations in the otherwise low-risk children age 6 to 23 months for whom vaccine is currently recommended would have cost approximately $281,000 ($46/child) more than the hospital charges saved. When all children age 6 to 23 months are considered, influenza vaccination is less costly than other prophylactic measures. Addition of indirect costs, deaths, outpatient costs, and the cost of secondary cases would favor the cost:benefit ratio for influenza vaccination of all children age 6 to 23 months.