The FDA reports that only five percent of clinical trial participants are Black, fewer than two percent are Asian, and fewer than one percent are Latino. This grossly uneven representation in clinical research means that current treatments may not be equally safe and effective for all populations. These findings suggest a need for a larger focus on the social determinants of health (SDOH) when designing clinical trials. Especially in light of recent concerns over the lack of racial diversity in COVID-19 research, it is urgent that we address this health equity issue.
eHealth Initiative & Foundation (eHI) released a report in partnership with the Health Care business of LexisNexis Risk Solutions entitled Assessing eHI’s Guiding Principles for Ethical Use of SDOH Data During COVID-19: Examples from the Field. The report describes the ways in which stakeholders collect and utilize social determinants of health (SDOH) data to create targeted interventions for vulnerable populations.
In 2019, eHI released the Guiding Principles for Ethical Use of Social Determinants of Health Data, which proposed recommendations for the ethical use of SDOH data by healthcare organizations. Today’s report delivers findings from a panel of experts convened from government, health care providers, and community-based organizations, who each presented examples of how the five guiding principles were applied during the COVID-19 pandemic.
The five guiding principles involve how to ethically:
- Employ SDOH in care coordination
- Recognize risk through analytics
- Map resources and identify gaps
- Assess impact
- Customize interventions and allow individuals to determine the best fit
The report emphasizes the importance of applying the Guiding Principles in ways that are transparent, respectful, and effective. “So many factors can impact a person’s health, factors that go beyond just a clinical diagnosis. We have an obligation to our communities to effectively and ethically apply SDOH analytics to identify those who need additional care services that can dramatically improve their health,” said Josh Schoeller, CEO at the Health Care business of LexisNexis Risk Solutions.
“As we continue to face this unprecedented health challenge, the ethical use of SDOH data improves healthcare and community organizations’ ability to provide the right interventions," said Jen Covich Bordenick, CEO of eHI. “We were pleased to join with LexisNexis Risk Solutions to highlight how organizations have stepped up to meet the needs of communities who are most impacted by the ongoing COVID-19 pandemic. We hope this report provides insights on how to provide whole-person healthcare.
eHealth Initiative Releases Report Highlighting Ethical Uses of SDOH Data During COVID-19
FOR IMMEDIATE RELEASE
The COVID-19 pandemic highlighted underlying challenges in data matching and patient identity and, in many cases, slowed public health efforts to respond to and contain the spread of the virus.
eHI invited participation in a survey to assess industry views and opinions on the importance of data matching and patient identity in the response to COVID-19. This webinar analyzes our findings.
Join eHI and CAQH on November 10th for an educational webinar on CAQH’s FHIR Payer Endpoints Directory, a centralized directory that securely publishes validated FHIR endpoints, simplifying how healthcare organizations and third-party apps find and share endpoint information. The informative presentation will dive into how the FHIR Payer Endpoints Directory intersects with new regulatory requirements in the CMS Interoperability and Patient Access Final Rule.
Tuesday, October 13
For Immediate Release
Contact: Wanneh Dixon at Wanneh@ehidc.org
eHealth Initiative Releases Report on Health Information Challenges in American Indian & Alaskan Native Communities Combating COVID-19
Webinar at 2 PM Today
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.
eHI updates the Data Analytics Workgroup on the feedback we have received on our Draft Consumer Privacy Framework for Health Data, a project undertaken in partnership with the Center for Democracy & Technology. Made possible with funding from the Robert Wood Johnson Foundation (RWJF), the Framework identifies and describes the current gaps in legal protection for health data outside of HIPAA’s coverage, as well as the standards and rules that should govern them. The Framework also includes a self-regulatory model that would hold companies accountable to these standards.
Alice Leiter, Vice President and Senior Counsel of the eHealth Initiative, presents the Draft Framework as part of a deep-dive discussion about the risks and consequences of consumer privacy violations that can result from the commercial collection and use of data, as well as how to mitigate that risk to avoid negative outcomes.
Deep Dive: Issues Affecting Native American Communities During the COVID-19 Crisis
American Indian and Alaska Native (AI/AN) persons are disproportionately affected by the COVID-19 pandemic. This webinar calls attention to the social determinants of health that put these individuals at significant risk for contracting the virus and experiencing adverse health outcomes due to it.
eHI, along with featured partner Booz Allen Hamilton, will discuss four innovative, sustainable, and effective solutions around the challenges of using health data and modeling to address the response to the COVID-19 pandemic. Booz Allen will share its success of the COVID-19 Safe Return Simulator, which integrates system dynamics and agent-based modeling to study the spread of COVID-19.
For more information, contact Wanneh Dixon.