scholarly journals A Qualitative Study to Develop a Privacy and Nondiscrimination Best Practice Framework for Personalized Wellness Programs

2020 ◽  
Vol 10 (4) ◽  
pp. 264
Author(s):  
Rachele M. Hendricks-Sturrup ◽  
Kathy L. Cerminara ◽  
Christine Y. Lu
Keyword(s):  
Genetic Testing ◽  
Best Practices ◽  
Health Information ◽  
Best Practice ◽  
Digital Health ◽  
Wellness Programs ◽  
The United States ◽  
Eu Law ◽  
Employee Privacy ◽  
The Us

Employers in the United States (US) increasingly offer personalized wellness products as a workplace benefit. In doing so, those employers must be cognizant of not only US law but also European Union (EU) law to the extent that the EU law applies to European immigrants or guest workers in the US. To the extent that wellness programs are implemented in either public health or employment contexts within the US and/or EU, sponsors of these programs can partner with direct-to-consumer (DTC) genetic testing companies and other digital health companies to generate, collect, and process sensitive health information that are loosely or partially regulated from a privacy and nondiscrimination standpoint. Balancing claims about the benefits of wellness programs are concerns about employee health privacy and discrimination and the current unregulated nature of consumer health data. We qualitatively explored the concerns and opinions of public and legislative stakeholders in the US to determine key themes and develop privacy and nondiscrimination best practices. Key themes emerged as promoting a culture of trust and wellness. Best practices within these themes were: (1) have transparent and prominent data standards and practices, (2) uphold employee privacy and nondiscrimination standards, (3) remove penalties associated with biometric outcomes and nondisclosure of sensitive health information, (4) reward healthy behavior regardless of biometric outcomes, and (5) make program benefits accessible regardless of personal status. Employers, DTC genetic testing companies, policymakers, and stakeholders broadly should consider these themes and best practices in the current absence of broad regulations on nondiscriminatory workplace wellness programs.

Digital Health Engagement in the US Population: Insights From the 2018 Health Information National Trends Survey

2021 ◽  
pp. e1-e4
Author(s):  
Chelsea L. Ratcliff ◽  
Melinda Krakow ◽  
Alexandra Greenberg-Worisek ◽  
Bradford W. Hesse
Keyword(s):  
Public Health ◽  
Health Information ◽  
Health Care Providers ◽  
Digital Health ◽  
Smart Device ◽  
P Value ◽  
Care Providers ◽  
Cross Sectional ◽  
The Us ◽  
National Trends

Objectives. To examine prevalence and predictors of digital health engagement among the US population. Methods. We analyzed nationally representative cross-sectional data on 7 digital health engagement behaviors, as well as demographic and socioeconomic predictors, from the Health Information National Trends Survey (HINTS 5, cycle 2, collected in 2018; n = 2698–3504). We fitted multivariable logistic regression models using weighted survey responses to generate population estimates. Results. Digitally seeking health information (70.14%) was relatively common, whereas using health apps (39.53%) and using a digital device to track health metrics (35.37%) or health goal progress (38.99%) were less common. Digitally communicating with one’s health care providers (35.58%) was moderate, whereas sharing health data with providers (17.20%) and sharing health information on social media (14.02%) were uncommon. Being female, younger than 65 years, a college graduate, and a smart device owner positively predicted several digital health engagement behaviors (odds ratio range = 0.09–4.21; P value range < .001–.03). Conclusions. Many public health goals depend on a digitally engaged populace. These data highlight potential barriers to 7 key digital engagement behaviors that could be targeted for intervention. (Am J Public Health. Published online ahead of print May 20, 2021: e1–e4. https://doi.org/10.2105/AJPH.2021.306282 )

A Viewpoint of Security for Digital Health Care in the United States

2014 ◽  
Vol 2 (1) ◽  
pp. 1-21 ◽  
Author(s):  
Steven A. Demurjian ◽  
Alberto De la Rosa Algarín ◽  
Jinbo Bi ◽  
Solomon Berhe ◽  
Thomas Agresta ◽  
...  
Keyword(s):  
United States ◽  
Health Care ◽  
Health Information ◽  
Information Exchange ◽  
Digital Health ◽  
The United States ◽  
Hard Copy ◽  
Health Providers ◽  
Patient Portals ◽  
Health Records

In health care, patient information of interest to health providers, researchers, public health researchers, insurers, patients, etc., is stored in different locations via electronic media and/or hard-copy formats. All potential users need electronic access to health information technology systems such as: electronic health records, personal health records, patient portals, and ancillary systems such as imaging, laboratory, pharmacy, etc. Controlling access to information from multiple systems requires granularity levels of privileges ranging from one patient to a cohort to an entire population. In this paper, we present a viewpoint of the state of secure digital health care in the United States, focusing on the resources that need to be protected as dictated by legal entities and regulations, the available approaches in the present state-of-the art, and, the potential needs for the future of security for digital health care. By utilizing a real world scenario, the authors explore the limitations of health information exchange in the United States, and present one possible architecture for secure digital health care that builds on existing technology alternatives.

The Response to Acquired Brain Injury in the United Kingdom: A Comparative Review

2019 ◽  
Vol 33 (2) ◽  
pp. 112-125
Author(s):  
Sophie Vivien Foster ◽  
Charles Edmund Degeneffe
Keyword(s):  
United Kingdom ◽  
Brain Injury ◽  
Best Practice ◽  
Acquired Brain Injury ◽  
The United States ◽  
The United Kingdom ◽  
Comparative Review ◽  
The Us ◽  
Care Systems ◽  
History Of

Background and ObjectiveThis article compares the policy, care systems, and legislation surrounding acquired brain injury (ABI) in the United Kingdom (UK) and the United States (US). Consistent with their shared histories, many similarities in terms of culture, language, and politics, and their history of cooperative relations in military and diplomatic efforts, the US and UK have taken similar approaches toward meeting the needs of persons with ABI and their family caregivers. However, important distinctions exist.Method and FindingsThrough a comprehensive narrative review, the article describes both common as well as distinct aspects of the system of ABI services from acute care through to long-term community rehabilitation.ConclusionsThe article concludes by discussing areas of potential collaboration in research, services, policy, and training to advance best practice approaches in both nations.

scholarly journals Exploring digital health care: eHealth, mHealth, and librarian opportunities

2021 ◽  
Vol 109 (3) ◽  
Author(s):  
Janet Chan
Keyword(s):  
Health Care ◽  
Health Literacy ◽  
Health Information ◽  
Digital Health ◽  
The United States ◽  
Security And Privacy ◽  
Care Providers ◽  
Vast Number ◽  
Health Technologies ◽  
Technology Advances

Technology advances in eHealth and mHealth are changing the way that health care consumers and providers communicate, receive and deliver care, and access health information. As electronic health records and smartphones have become ubiquitous in the United States, opportunities and applications for the integration of eHealth and mHealth have increased. In addition to technology advances, the changing health care model is simultaneously adapting to and driving initiatives in digital health care. With these digital initiatives have come challenges, including data overload, security and privacy concerns, deficits in technological and health literacy skills, and sorting through the vast number of choices of digital applications. Navigating this changing landscape can be overwhelming and time consuming for both health care providers and consumers. Librarians are uniquely positioned to assist providers and consumers to break down barriers within the digital health care landscape through data management initiatives, technology and health literacy instruction, and finding and evaluating health information and digital health technologies.

Engaging the Third Estate: The Transplant Growth and Management Collaborative

2009 ◽  
Vol 19 (3) ◽  
pp. 235-243 ◽  
Author(s):  
Shannon Dowell ◽  
Anthony Dawson ◽  
Virginia McBride
Keyword(s):  
Best Practice ◽  
Health Resources ◽  
The United States ◽  
Practice Change ◽  
Organ Donors ◽  
Volume Increase ◽  
High Performing ◽  
Department Of Health ◽  
The Us ◽  
The Impact

The Organ Donation and Transplantation Collaboratives that occurred within the United States from 2004 to 2008 helped contribute to a significant increase in organ donors and transplants across the country. Centers were needed to accommodate and maintain this increase in capacity to perform successful transplantations for candidates on the waiting list. The Transplant Growth and Management Collaborative was created to help fulfill this new performance level expectation. In 2007 the US Department of Health and Human Services, Health Resources and Services Administration published a best-practice report based on high-performing centers that experienced a significant increase in volume while maintaining expected, or higher than expected, outcomes. The report produced a change package that outlined common strategies, key change concepts, and actions used at the best-practice centers that could be adapted by other transplant programs by using Plan-Do-Study-Act cycles to test the impact of the changes. This change package and use of the Plan-Do-Study-Act cycles formed the foundation of the Collaborative that occurred from October 2007 through October 2008 to spread best practices to transplant programs willing to commit to making changes that could result in a 20% increase in transplant volume. More than 120 transplant centers participated at some point in the Collaborative. Although preliminary results of the Collaborative show that only a few participating programs achieved the 20% volume increase goal, many participating centers reported putting successful models in place for each of the strategies identified in the best-practice change package.

scholarly journals Preserving Employee Privacy in Wellness

2017 ◽  
Vol 31 (4) ◽  
pp. 271-273 ◽  
Author(s):  
Paul E. Terry
Keyword(s):  
Genetic Testing ◽  
Family Member ◽  
Genetic Information ◽  
Wellness Programs ◽  
Employee Wellness ◽  
Employee Privacy ◽  
Specific Language ◽  
Health Screenings ◽  
Employee Wellness Programs

The proposed “Preserving Employee Wellness Programs Act” states that the collection of information about the manifested disease or disorder of a family member shall not be considered an unlawful acquisition of genetic information. The bill recognizes employee privacy protections that are already in place and includes specific language relating to nondiscrimination based on illness. Why did legislation expressly intending to “preserve wellness programs” generate such antipathy about wellness among journalists? This article argues that those who are committed to preserving employee wellness must be equally committed to preserving employee privacy. Related to this, we should better parse between discussions and rules about commonplace health screenings versus much less common genetic testing.

scholarly journals Understanding Implementation Challenges to Genetic Testing for Familial Hypercholesterolemia in the United States

2019 ◽  
Vol 9 (1) ◽  
pp. 9 ◽  
Author(s):  
Rachele Hendricks-Sturrup ◽  
Christine Lu
Keyword(s):  
United States ◽  
Genetic Testing ◽  
Familial Hypercholesterolemia ◽  
Ethnic Diversity ◽  
Heart Association ◽  
The United States ◽  
Cvd Risk ◽  
Implementation Challenges ◽  
The Us ◽  
Control And Prevention

Cardiovascular disease (CVD) is the leading cause of death in the United States (US), with familial hypercholesterolemia (FH) being a major inherited and genetic risk factor for premature CVD and atherosclerosis. Genetic testing has helped patients and providers confirm the presence of known pathogenic and likely pathogenic variations in FH-associated genes. Key organizations, such as the Centers for Disease Control and Prevention (CDC), American Heart Association (AHA), FH Foundation, and National Lipid Association (NLA), have recognized the clinical utility of FH genetic testing. However, FH genetic testing is underutilized in clinical practice in the US for reasons that are underexplored through the lens of implementation science. In this commentary, we discuss seven key implementation challenges that must be overcome to strengthen the clinical adoption of FH genetic testing in the US. These implementation challenges center on evidence of cost-effectiveness, navigating patient and provider preferences and concerns, gender and ethnic diversity and representation in genetic testing, and establishing clinical consensus around FH genetic testing based on the latest and most relevant research findings. Overcoming these implementation challenges is imperative to the mission of reducing CVD risk in the US.

Occupational Therapy Practitioners’ Knowledge, Comfort, and Competence Regarding Youth Suicide

2020 ◽  
Vol 40 (4) ◽  
pp. 270-276 ◽  
Author(s):  
Anne V. Kirby ◽  
Alexandra L. Terrill ◽  
Ariel Schwartz ◽  
Jarrett Henderson ◽  
Brandi N. Whitaker ◽  
...  
Keyword(s):  
United States ◽  
Young People ◽  
Occupational Therapy ◽  
Best Practices ◽  
Best Practice ◽  
The United States ◽  
Education And Training ◽  
Youth Suicide ◽  
Clinical Scenarios ◽  
And Training

Suicide rates for young people are climbing in the United States and worldwide. Increasing rates of youth suicide are of concern to occupational therapy (OT) practitioners in pediatric settings, yet the profession’s role in this area is poorly defined. To understand OT practitioners’ awareness and needs related to youth suicide, we administered a survey including objective (e.g., knowledge of suicide-related facts) and subjective items (open- and close-ended questions) related to youth suicide to 134 OT practitioners working in pediatric settings. Only 5.2% of respondents correctly answered four items about youth suicide facts and only 32% reported they had received suicide-focused education. Just under half (45%) of respondents were able to identify all best practice responses to clinical scenarios related to youth suicide; older practitioner age was the only significant predictor of best practices. OT practitioners in pediatric settings would benefit from youth-focused suicide education and training.

Genetics and the Law

2021 ◽  
Author(s):  
Maxwell Mehlman ◽  
Sonia Suter
Keyword(s):  
Genetic Testing ◽  
Genetic Information ◽  
Ethical Issues ◽  
Genomic Analysis ◽  
State Level ◽  
The United States ◽  
Genetic Privacy ◽  
Duty To Warn ◽  
Us Congress ◽  
The Us

This chapter examines state and federal laws in the United States that govern legal and ethical issues concerning genetic and genomic analysis for diagnostic purposes; regulation of genetic testing, genetic discrimination, and privacy; and clinical applications of genomics. At the state level, legislatures have enacted laws in various areas, including newborn screening and nondiscrimination and privacy protections. In addition, state courts have addressed some issues concerning genetics, such as the duty to warn. At the federal level, the US Congress has enacted a specific statute, the Genetic Information and Nondiscrimination Act, which protects genetic information. Other federal statutes, which do not address genetics or genomics in particular, also have relevance in the genetics context, including laws that protect against certain forms of discrimination or that regulate laboratories. Federal agencies also play a role, for example, in protecting genetic privacy or regulating genetic tests. Finally, the US Constitution is relevant to genomics, especially concerning reproductive rights, which are pertinent to reproductive genetic testing.

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