Genomic Data Sharing Policies Must Protect Patient Privacy, Minimize Risk

By Michael Saito (Epic), Chair & Nam Nguyen, (Allscripts) Vice Chair, EHRA Privacy & Security Workgroup

The National Institutes of Health’s (NIH) ongoing objective of sharing research data sets to facilitate additional study is something EHRA member companies wholly support – as long as it protects patient privacy, ensures patients can provide informed and meaningful consent for use of their data, and minimizes the risk that patients’ genomic and other health data can be re-identified or misused. 

To that end, we took advantage of the NIH’s recent Request for Information (RFI) on the proposed updates to and long-term considerations for its Genomic Data Sharing (GDS) Policy to provide feedback in the key areas of de-identification, potentially identifiable information, and data linkages.

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“No Surprises Act” Regulations Raise Concerns

By Leigh Burchell (Allscripts), Chair, & Janet Campbell (Epic), Vice Chair,
EHRA Public Policy Leadership Workgroup

The growth in high deductible health plans requiring patients to shoulder more of their healthcare costs and the lack of transparency in healthcare pricing has exacerbated the issue of patients left with surprise medical bills that many cannot afford to pay. The urgent need to address these serious issues is why the EHRA supported the No Surprises Act when it was developed and welcomed the regulations published last year as a foundation upon which it can be implemented. 

However, we have several concerns about rulemaking to date as it relates to workability and the unnecessary burden it creates for industry stakeholders. To that end, we reached out proactively to regulatory agencies to provide feedback in four key areas that we believe – based on our member companies’ experiences and our ongoing advocacy for reasonable timelines and requirements – will be informative when it comes to additional regulatory actions expected later this year. 

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SDOH and Health Equity: Summarizing the EHRA Congressional Briefing – Part 2

Ambulatory and Health System Perspectives

By EHRA Public Policy Leadership Workgroup

Part one of this two-part blog series summarized insights around SDOH and health equity from the developer and community perspectives, which were shared during the recent virtual Congressional Briefing hosted by EHRA’s Public Policy Leadership Workgroup. Part two shares the ambulatory and health system perspectives. The presentation slides and full briefing (passcode: H@R$UZ02) are available in the “Positions and Statements” section of EHRA’s website. 

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SDOH and Health Equity: Summarizing the EHRA Congressional Briefing – Part 1

Developer and Community Perspectives

By EHRA Public Policy Leadership Workgroup

Health equity and social determinants of health (SDOH) currently play a large role in the national conversation on health care, with the Biden Administration ranking it as one of its highest priorities. Practically, however, these discussions have been underway for years.

SDOH and health equity are a public policy and care coordination challenge, one that health IT can play an important role in resolving. Consider that 80% of health is determined by non-clinical factors. However, there is a wide information gap separating healthcare organizations and the social and community agencies at the forefront of identifying and addressing these socioeconomic needs. Health IT and interoperability standards facilitate the secure, seamless exchange of patient data between these environments to improve population and individual patient health outcomes.

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The USCDI Curation Process: Why Stratify?

By John Travis and members of the EHRA Information Blocking Task Force 

In our last blog on the United States Core Data for Interoperability (USCDI), the focus was on USCDI as the policy ground for advancing federal interests for promoting high impact needs for health data, and USCDI’s import as a certification specification impacting developers of Certified Health Information Technology (CHIT). In this blog, we focus on how the evolution and curation of USCDI impacts the efforts of health IT developers and implementers to “stay current.” 

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The Balance Challenge for Policy in Progressing the U.S. Core Data for Interoperability (USCDI)

By John Travis and members of the EHRA Information Blocking Task Force

 

With publication of the 21st Century Cures Act: Interoperability, Information Blocking , and ONC’s Certified Health IT program final rule (Cures Act Final Rule), the Office of the National Coordinator for Health IT (ONC) worked to implement important provisions of the 21st Century Cures Act (Cures Act) for nationwide interoperability. The initial proposal from ONC addressing the Trusted Exchange Framework and Cooperative Agreement (TEFCA), which was also required by the Cures Act, created a central role for the U.S. Core Data for Interoperability (USCDI) in federal health IT policy, and it is important to consider what that role will be in the national policy framework. Will the USCDI push the industry beyond where it would go on its own by being progressive in its version expansion? Will it affirm and codify an extension of the current state, adhering to a principle of expansion based on supporting pre-requisites of already established interoperability standards? Or something in between?

In recent deliberations of the USCDI Task Force of the Health Information Technology Advisory Committee (HITAC), the Federal Advisory Committee established under the Cures Act, this tension point has come to light. The members of the task force seem to have two perspectives on the matter. 

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