There's a slow but steady march toward easing patient access to medical records

It should be easier for patients to access their medical records now, but there’s still more to do.

It’s getting progressively easier for Americans to access their medical data — a right that has been legally protected but practically stymied for decades.

In October, a new rule went into place that says health providers must give patients digital access to their medical records without hefty charges or long delays. Part of the 21st Century Cures Act, the mandate applies to all electronically protected health information, including things like fingerprints or photos. 

The new law is an achievement for patient rights. But advocates stress it doesn’t resolve the challenges patients have faced for years when they request medical records from doctor offices or hospitals. Providers have long dragged their feet on providing easy access to records, sometimes charging exorbitant prices or transmitting them only through archaic means like fax machines.

Worried about noncompliance in the health industry, patient advocates are pushing for health providers to adhere to these federal guidelines and face penalties for creating obstacles. 

“From a patient access perspective, patients have always had the right to access the entirety of their health records,” said Deven McGraw, the chief regulator officer at Citizen, a health technology start-up. “So the October expansion was not a monumental event for patient access.” 

Foster’s bill

Rep. Bill Foster (D-Ill.) is also reaching for some reforms to medical record access with legislation he introduced in April. Foster’s Medical Records Access Fairness Act would address cost issues by requiring providers give patients medical records free at least once a year. 

In an interview, Foster described accessing patient information as an ongoing problem that is a symptom of a larger issue — people are consistently uninformed about their health-care data leading to a “huge gap in knowledge and care.” 

But McGraw says the new legislation doesn’t go far enough. Foster’s bill doesn’t prohibit providers from charging patients for paper records if they’ve provided an electronic copy.

Foster acknowledged his bill is simple and limited. But he envisions it as part of a larger package to address outstanding problems with accessing medical data. 

Unique patient identifiers

Foster has also been looking into the issue of unique patient identifiers (UPIs). UPIs are the equivalent of a Social Security number, allowing patient health information to be stored exclusively under one number paired with an individual. They were banned in 1998, and many advocates believe bringing them back would allow health data to be shared more seamlessly and reduce medical errors. 

• “Many Americans die yearly because you get incorrect or fragmented electronic health records,” Foster said. “Some people have very complicated health conditions, and this would allow individuals to authenticate themselves as a single, identifiable person and then pull in all the records from whatever providers are storing in their separate systems.” 

Allowing UPIs would also prevent health systems from “maintaining their dominion over patients,” according to Harlan Krumholz, a cardiologist and founding director of the Yale Center for Outcomes Research and Evaluation (CORE). If patients could more easily obtain their records, they might be more prone to switching doctors if they think it might improve their care.

• “If it’s too difficult for people to get second opinions and to actually shop for different providers, then it impairs competition because people stay not because that’s the best value, but because it's just too much trouble to move,” Krumholz said. 

Poor compliance

A 2018 study found that despite federal mandates to provide health records, many top-ranked hospitals failed to comply with the laws. Only 53 percent of hospitals in the study allowed access to the patient’s entire medical records. There were also discrepancies between what the medical request forms indicated and what was released by the hospitals. 

“We’re having a larger societal conversation and debate over who owns our data and what they can do with it and who has access to it,” said Catherine M. DesRoches, an associate professor of medicine at Harvard Medical School and the director of OpenNotes, an organization that is pushing for more open health-care access. “Offering patients access to this kind of information can help improve the safety of their care.”

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