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.” 

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. 

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.”

Omni-update: Congressional staff worked throughout the weekend to attempt to hash out a deal on a sweeping package to fund the government through next September, according to multiple people with knowledge of the discussions. Throughout the weekend, there were some unresolved provisions, and as our pals at The Early 202 note this morning, text is expected to be wrapped today.

Key negotiators need to clinch a deal soon to get it passed by the end of the week. That’s when a stopgap funding bill runs out — and when lawmakers want to make sure they’re heading home for the holidays. Such a package is the last opportunity to pass a number of health policies this year, such as boosting Medicaid coverage for new moms and fending off cuts to providers’ pay.

Vatican dismisses antiabortion activist from priesthood

The Vatican removed the high-profile Catholic leader and antiabortion activist Frank Pavone from the priesthood over his “blasphemous communications on social media” and “persistent disobedience” of his diocesan bishop, according to a letter from Pope Francis’s representative to the United States obtained by the New York Times.

The details: Pavone, the national director of the group Priests for Life, is a frequent speaker at the annual March for Life in D.C., and sits on the board of directors for the National Association of Christian Lawmakers. He also is a religious adviser to former president Donald Trump. Pavone’s antiabortion activism wasn’t cited as a reason for his dismissal, and the letter didn’t specify the causes, the NYT reports. 

Within the antiabortion movement, Pavone is known for the incendiary statements he makes online, which often go beyond what many mainstream antiabortion advocates say publicly. For example: He has spoken about his belief that abortion is never necessary to save a mother’s life, The Post’s Caroline Kitchener writes.

Pavone’s dismissal from the priesthood has added to the frustrations felt by many of the most fervent antiabortion advocates, with some questioning why church leadership would choose to punish someone so fiercely committed to what they see as a core Catholic value. 

White House prescriptions

Here’s one 2024 dynamic to watch: Florida Gov. Ron DeSantis (R) is reversing himself on coronavirus vaccines, and moving to the right of former president Donald Trump. 

The Post’s Isaac Arnsdorf reviewed Desantis’s public positions on the coronavirus shots the governor once praised and found a full reversal that’s unfolded gradually since 2021. His new hard-line position is significant: DeSantis is widely viewed as a potential presidential candidate in 2024, as many in the GOP want him to challenge Trump. Some see vaccines as a potential wedge issue to outflank the former president from the right. 

Pediatric hospital bed shortage isn’t just because there are more sick kids

The number of hospital systems offering pediatric services in the United States plunged by nearly one-third over the past two decades, The Post’s Christopher Rowland, Dan Keating and Daniel Gilbert report. 

That means the shortage of beds for children with respiratory syncytial virus (RSV), influenza and coronavirus isn’t just because of a rise in sick children. 

By the numbers: More than 3,500 hospitals across the country provided pediatric specialists in 2000. But as of this year, only 2,412 said they do — a decline of 32 percent, according to a Washington Post analysis of data gathered by the Centers for Medicare and Medicaid Services.

Driving factors: Pediatric beds lose money because they often are unoccupied. Even when they’re filled, they generate less revenue for hospitals than adult beds because children usually have less complex health problems. Child hospital admissions also are in decline because advances in care have turned procedures that were once routine for a hospital’s pediatric wing, such as tonsillectomies, into an outpatient service. 

Why it matters: As hospitals cut back on pediatric beds, families are often forced to travel to large children’s hospitals that field patients from entire regions, rather than receiving care near their home. 

Pandemic-era border rule slated to end this week

Is another longtime pandemic-era rule coming to an end? The Trump-era policy allowing authorities to rapidly expel border crossers for public health reasons is set to expire Wednesday unless the Supreme Court intervenes.

A federal appeals court on Friday denied a GOP-led effort to retain what’s known as Title 42 — a move Republican officials behind the challenge have signaled they plan to appeal, The Post’s Amy B Wang and Ariana Eunjung Cha report. 

Flashback: In April, bipartisan backlash to the Biden administration’s decision to relax pandemic restrictions at the U.S. border threw swift passage of billions of dollars in coronavirus aid into doubt. The deal never recovered, and the White House has pushed for more since then to no avail. 

• Pfizer-BioNTech and Moderna’s updated coronavirus booster shots are effective at preventing serious illness, cutting the risk of hospitalization during the BA.5 period by 57 percent compared with the unvaccinated, The Post’s Lena H. Sun reports, citing two new reports from the Centers for Disease Control and Prevention.
• A fast-spreading covid-19 outbreak in China has researchers predicting a surge in virus-related deaths next year, with several analyses forecasting more than 1 million fatalities in a country that until now has largely kept the coronavirus in check, our colleague Sammy Westfall writes.
• The Food and Drug Administration is planning to convene its panel of independent experts late next month to discuss whether the original doses of the coronavirus vaccine should be modified to better target the virus’s variants.

Weight-loss drugs are a milestone for the obese but expose health inequity (By Laurie McGinley and Lenny Bernstein l The Washington Post)

Can a Federally Funded ‘Netflix Model’ Fix the Broken Market for Antibiotics? (By Andrew Jacobs | The New York Times)

The Failed Promise of Online Mental-Health Treatment (By Rolfe Winkler | The Wall Street Journal)

Thanks for reading! See y’all tomorrow.