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From unprecedented Congressional and regulatory action on telehealth reimbursement to the release of final interoperability and information blocking rules, 2020 was a busy year for health technology professionals – and 2021 shows no signs of slowing down. Join eHI staff and Policy Steering Committee members for a deep-dive on the latest in health technology policy, eHI’s advocacy work, and a look ahead to the 117th Congress.

Racial inequities and health and socioeconomic disparities between American Indian/Alaskan Native (AI/AN) people and the U.S. non-Hispanic white population have harmed tribal communities for many generations. The seriousness and depth of longstanding public health problems have been brought into sharp focus with the onset of the COVID-19 pandemic. Increases in funding and improvements in data collection, information sharing, infrastructure, and culturally responsive healthcare services are urgently needed to eliminate these inequities across rural and urban tribal communities in the U.S. 

In August 2020, eHealth Initiative Foundation (eHI) and Philips hosted a virtual Roundtable meeting, titled Supporting Native American Communities Combating the COVID-19 Pandemic. 

The purpose of the meeting was to explore the impact of the novel coronavirus (COVID-19) on rural and urban American Indian and Alaskan Native (AI/AN) populations throughout the United States; enumerate the social determinants of health (SDOH) and other factors driving disparities in COVID-19 infection rates, treatment, prevention, testing, contact tracing and secondary behavioral health issues across the country’s diverse tribal communities; and gather insights regarding the resources needed to enable AI/AN communities to more effectively reduce infection rates and gain access to services. 

The meeting was organized to provide a starting point for the development of programs and materials – beginning with this issue brief – to raise awareness among healthcare professionals of the daunting challenges facing tribal populations related to COVID-19, and to help the healthcare sector work more closely with tribal leaders and citizens, advocacy groups, public health experts, and government agencies in responding to the needs of AI/AN communities. 

Roundtable participants included experts and leaders in AI/AN health, tribal culture and economics from the government, non-profit, and academic sectors (see Appendix for a full participant list). eHI plans to convene future Roundtables and to collaborate further with AI/AN organizations to develop additional resources to expand the learning and support initiated by this meeting; explore more fully some of the most pressing  needs and issues identified; and generate a framework that can be used for COVID-19-related advocacy and information-sharing in support of AI/AN communities. 
 

This whitepaper highlights recommendations from eHI's COVID-19 Federal Policy Work Group and endorsed by leading health care and digital health organizations.

Formed in April 2020, eHI’s COVID-19 Federal Policy Work Group met over the course of four months to help craft a report with a set of policy recommendations to fully leverage health IT and digital health to fight COVID-19 and future public health challenges. The group focused on five issue areas: (1) telehealth and remote patient monitoring; (2) artificial intelligence and machine learning; (3) broadband; (4) health information exchange; and (5) public health surveillance, and ultimately produced consensus policy recommendations in each area.

Washington, DC – August 7, 2020 – Today, eHealth Initiative Foundation (eHI) released Insights from Pharmaceutical Manufacturers & Payers: Addressing Social Determinants of Health (SDOH) and Advancing Health Equity. The paper shares examples of collaborative initiatives currently deployed by pharmaceutical manufacturers and payers to address SDOH during COVID-19.

FOSTER CITY, Calif. & ATLANTA--(BUSINESS WIRE)-- Gilead Sciences, Inc. (Nasdaq: GILD) and the Satcher Health Leadership Institute at Morehouse School of Medicine are working together to develop a real-time, public-facing and comprehensive health equity data platform to help address the impact of COVID-19 and other diseases on communities of color.

The tool will provide the ability to collect and study the demographic disparities associated with COVID-19, with the goal of using this data to help create actionable, evidence-based policy changes to attain health equity and ensure that disproportionately impacted communities receive resources and support. The database will also examine comorbidities associated with COVID-19, including asthma, diabetes, heart disease, cancer, obesity, sickle cell anemia and depression.

COVID-19 data demonstrates that the disease disproportionately impacts racial and ethnic minority groups, particularly Black Americans.

“As we have seen, COVID-19 is magnifying inequities that predate the pandemic,” said Daniel E. Dawes, Director of the Satcher Health Leadership Institute at Morehouse School of Medicine. “Black Americans, Native Americans, Latinx Americans, Asian and Pacific Islander Americans still contend with neighborhoods that are largely devoid of health-sustaining and health-protective resources, and they still contend with the political determinants or drivers that created, perpetuated and exacerbated these health inequities. We are honored to partner with Gilead to address the root causes of health inequities. Our collective effort intends to create systemic policy change and realize more equitable outcomes for all population groups.”

Gilead will initially provide $1 million for the project and also to support the creation of a Black Health Equity Alliance, composed of national thought leaders, community representatives, scholars, researchers and policymakers, which will help coordinate COVID-19 education, training, information exchange and dissemination, and policy analysis.

“The data we are compiling with the Satcher Health Leadership Institute will provide the insight we need to help build a better healthcare system for the Black community,” said Douglas M. Brooks, Executive Director of Community Engagement at Gilead Sciences. “At the core, the work we do at Gilead is being on the frontlines where the need is greatest, as we’ve done in HIV and hepatitis C in communities across the country. There are many hurdles in the American healthcare system for the Black community to access care and without data like this, we'll be having the same conversation when the next pandemic strikes. We look forward to working with Morehouse School of Medicine to help address these issues.”

Data show that in the United States, the Black community is disproportionately impacted by COVID-19:

• Black people account for nearly 25 percent of the total number of U.S. COVID-19 deaths, although they represent only 13 percent of the country’s total population.
• Compared to white people, Black people have been nearly twice as likely to die from the virus.
• An estimated 60 percent of COVID-19 deaths occurred in disproportionately Black counties.
• Black people are approximately five times more likely to contract COVID-19 than white people.

The data map will go live and be available to the public in the fourth quarter of 2020.

About Satcher Health Leadership Institute

The Satcher Health Leadership Institute (SHLI) aims to be the leading transformational force for health equity in policy, leadership development and research. Rooted in the legacy of its founder, the 16th U.S. Surgeon General, Dr. David Satcher, SHLI’s mission is to create systemic change at the intersection of policy and equity by focusing on three priority areas: the political determinants of health, health system transformation, and mental and behavioral health. In conjunction with key strategic partners, SHLI enhances leadership among diverse learners, conducts forward-thinking research on the drivers of health inequities and advances evidence-based policies, all in an effort to contribute to the achievement of health equity for all population groups. Learn more at https://satcherinstitute.org; https://healthequitynetwork.org.

About Morehouse School of Medicine

Morehouse School of Medicine (MSM), located in Atlanta, Ga., exists to improve the health and well-being of individuals and communities, increase the diversity of the health professional and scientific workforce and address primary health care through programs in education, research and service, with emphasis on people of color and the underserved urban and rural populations in Georgia, the nation and the world. MSM is among the nation’s leading educators of primary care physicians and has twice been recognized as the top institution among U.S. medical schools for its dedication to the social mission of education. The faculty and alumni are noted in their fields for excellence in teaching, research and public policy, and are known in the community for exceptional, culturally appropriate patient care. Morehouse School of Medicine is accredited by the Commission on Colleges of the Southern Association of Colleges and Schools to award doctorate and master’s degrees.

About Gilead Sciences

Gilead Sciences, Inc. is a research-based biopharmaceutical company that discovers, develops and commercializes innovative medicines in areas of unmet medical need. The company strives to transform and simplify care for people with life-threatening illnesses around the world. Gilead has operations in more than 35 countries worldwide, with headquarters in Foster City, California.

Although the country is beginning to reopen, the COVID-19 virus remains a very real threat, and it continues to have a significant impact on all aspects of the healthcare system. In the wake of the coronavirus outbreak, the Department of Health and Human Services acted swiftly to make a number of changes to federal privacy protections, as well as issuing updates and guidance, in order to improve the nation’s ability to share information to provide safe and effective care.

Although most of the changes are specific to the crisis and thus not intended to be permanent, there are no explicit expiration dates, and many have argued that some of the adjustments – particularly that related to telehealth – should remain in place even after the virus has been contained.

Below we summarize these changes to the privacy protections for health data and provide links to additional resources.

Health data – including health used for non-health-related purposes – is not regulated by a single national privacy framework. HIPAA is the primary federal law governing the use and disclosure of protected health information, but HIPAA covers an increasingly smaller slice of the health data pie. Other federal laws may apply, both to data regulated by HIPAA and to data outside of HIPAA’s framework, and states have their own sets of often-more-restrictive laws. In short, the current legal landscape is a patchwork of laws, sometimes overlapping (and at times conflicting), with numerous gaps in comprehensive protections.

As health data liquidity rapidly increases, collection of health and “health-ish” data has dramatically outpaced existing regulatory safeguards. There are a wide variety of new vehicles for patient-directed electronic data exchange from health care providers or health plans to entities not covered by HIPAA, in addition to a sharp rise in consumer- and patient-generated data – including from wearable and remote-monitoring devices and on-demand genetic testing services. This is leading to the ever-growing collection of identifiable and individually attributable data, as well as its mining for a diverse assortment of purposes.