Election 2020 House Colorado Diana DeGette

U.S. Rep. Diana DeGette, D-Denver, during a committee hearing on May 8, 2018, in Washington.

WASHINGTON  The U.S. Senate attempted to take another step Tuesday in implementing legislation to establish a nationwide database of patients’ healthcare records.

Witnesses from the health care industry said during a hearing that health records that follow patients down through time and anywhere they travel could improve the quality of care and prevent unnecessary deaths.

They also could reduce administrative burdens on doctors who otherwise would need to repeat record-keeping completed elsewhere.

The Senate Health, Education, Labor and Pensions Committee was discussing provisions of the 21st Century Cures Act, which was co-authored by Colorado U.S. Rep.  Diana DeGette (D-Denver), and approved by Congress in 2016.

Sen. Lamar Alexander, a Tennessee Republican and chairman of the committee, called the legislation “the most important bill we passed in that Congress.”

One proposed rule under the Cures Act would require that by Jan. 1, insurance companies share their healthcare records with patients who they insure.

Lawmakers hoped the rule would give patients more control over their records. They also seek to protect patients’ privacy if they do not want the information released.

Another provision would prohibit information blocking, which refers to doctors or medical institutions that interfere with the exchange of patients’ electronic health information. The free exchange of information with patients’ permission is supposed to be guaranteed under the Health Insurance Portability and Accountability Act of 1996.

One example of data sharing required under the rule would compel hospitals to send electronic notifications to doctors when their patients are admitted, discharged or transferred.

The Office of the National Coordinator for Health Information Technology (ONC) wants to make the data sharing, and “interoperability” of electronic records, a requirement for certification of health information technology systems.

"This will be a huge relief to any of us who have spent hours tracking down paper copies of our records and carting them back and forth to different doctors' offices," Alexander said.

He estimated the proposed rules would give more than 125 million patients easier access to their health records.

One obstacle faced in data sharing is the variety of computer systems used by various doctors, hospitals and other medical institutions.

Expert witnesses at the Senate hearing said the proposed rules will succeed only if the ONC can enforce a standardized system for identifying patients while electronically sharing their information.

Many patients are not recognized under current data sharing systems, said Ben Moscovitch, project director of health information technology for the Pew Charitable Trusts, a nonprofit organization with more than $6 billion in assets that seeks to improve public policies.

“When data are exchanged, records may not be matched up to half of the time,” Moscovitch said.

The result can be dangerously inappropriate drug dosing or delays in treatment, he said.

Any new standards need to use a consistent method of identifying patients, he said.

However, he also acknowledged that patients’ privacy could be jeopardized unless safety systems are embedded in the data sharing.

Lucia Savage, chief privacy and regulatory officer for Omada Health Inc., agreed that data sharing could benefit patients but said current proposals might not reach enough of the healthcare industry.

She suggested that more health information technology vendors be required to meet proposed standards for interoperable systems. The current proposal would cover only certified electronic health record vendors.

“The proposed rule does not reach to health information technology in the emerging world of connected devices or software as a medical device,” Savage said. As a result, some laboratories and pharmacies might be omitted from the rule.

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