May I have my medical records, please?

March 19, 2020

New interoperability rules put patients in control of health data and play a key part of broader transparency effort

In a victory for patients and independent doctors, the U.S. Dept. of Health and Human Services released two rules this month that will ultimately wrest control of electronic health records away from those who profit from keeping that data locked in health-system silos, and will deliver that information into the hands of the patients to whom it belongs.

And we’re all grateful. Well, almost all.

The landmark win for consumers marks a critical milestone in a four-step process leading to broad price, outcome and record transparency, which patient advocates have been driving toward. If realized, the sought-after disruption would turn our dysfunctional health-care market into a free, functioning one, while putting patients in control, introducing competition and choice, and causing health-care prices to come tumbling down.

Hard to imagine. But we’re only a few mouse clicks away.

But back, for a moment, to the recent news. The two interoperability rules, one from the Office of the National Coordinator for Health Information Technology (ONC) and the other from Centers for Medicare & Medicaid Services (CMS), work in tandem to implement promises made in the 21st Century Cures Act, which passed with bipartisan support in 2016.

The ONC rule require vendors of electronic health records, hospital systems, and networks to make medical information easy for patients to access on their phones, and share whenever and with whomever they choose. In other words, EHR vendors must tear down the walls they’ve built around patient information and build bridges instead.

The CMS rule will further require insurers to pull back the curtain on five years of patient claim data, so patients can have full visibility into not only the price of services, but also what they were actually charged.

“These rules are the start of a new chapter in how patients experience American health care,” said HHS Secretary Alex Azar, “opening up countless new opportunities for them to improve their health, find the providers that meet their needs, and drive quality through greater coordination.”
Besides giving patients unobstructed access to their health information, the new rules will also remove barriers that have prevented independent doctors from having the same access to information that doctors employed by health systems have.

Hospital systems, in their desire to own market share and increase profits by employing physicians, have long used EHR not as a tool but as a weapon to exclude independent doctors. Through a common practice known as information blocking, doctors who aren’t employed in a health system often can’t get access to their own patients’ information, without which they’re at a disadvantage.

“These new rules mark a giant step forward for patients by putting them at the center of their care,” said Cynthia Fisher, founder of PatientRightsAdvocate.org, an ardent champion of price and record transparency and access. “When patients have their whole health picture in hand, and can give complete information to their health-care providers, they will save time and money, gain wider access to better care, and avoid duplicate testing. When armed with complete information, doctors will be able to provide more accurate diagnoses and better treatments. Ultimately, these rules will save lives.”

These new rules might also slow the trend toward health-care consolidation, which studies show drives up costs, lowers quality and burns out doctors. 

“Lack of electronic record sharing has driven many doctors out of private practice and into hospital employment,” said Dr. Daniel Layish, an independent Orlando-based pulmonologist, who welcomed the new rules. “Doctors don’t know which EHR systems to invest in, and worry that their investment won’t mesh with the ones the health systems in their area use.”

In general, independent doctors provide lower-cost care than that found in health systems because independent doctors don’t charge facility fees, and aren’t pressured to meet the productivity quotas for tests, referrals and admissions that employed doctors are expected to make.

Predictably, those who stand to lose profits and control aren’t as enthusiastic about the life-saving guidelines. Epic, the largest EHR vendor in America, and their likes have been fighting the rules since the ONC first drafted them more than a year ago. They have threatened to sue the government while issuing scare tactics, such as telling the public that our most sensitive information is at risk.

This is the same public that manages to handle sensitive banking information on their phones every day without concern.

As to how the new interoperability rules fit into the big transparency puzzle, here are the four steps, including the hurdles we have yet to clear. If the plan comes together as many of us working on behalf of patients -- and not our pockets -- hope, we may yet have a functional health-care market, driven by competition, price and choice:

Step 1: Hospitals must post all prices.

To have a truly competitive market, consumers need to know and be able to compare price and quality. In June 2019, President Trump issued an executive order asking hospitals and doctors to post their prices, both cash and contracted rates, and outcome data. Following that order, HHS issued a rule requiring hospitals to make that information easily accessible by January 2021. The American Hospital Association and other hospitals challenged the rule in federal court and won their case. HHS appealed that decision, and we are awaiting the circuit court’s verdict.

Step 2: Insurers must reveal secret negotiated rates.

To have full transparency, insurers’ secret negotiated rates must also be in the sunshine. That would let consumers and businesses shop and compare plans against cash prices. A study led by Larry Van Horn, an economist at Vanderbilt University, found that cash prices were 39 percent less on average than prices paid by insurers. HHS has proposed a rule that would require insurers to reveal negotiated prices, opening the way for competition. Following an open comment period, the proposed rule is now under review. We expect CMS to announce its decision in the next few months.

Step 3: Electronic health records must be made accessible.

Here’s where the new interoperability rules come in. Having access to transparent prices and outcomes will allow consumers to shop for the best prices and value. Having access to their electronic health records on an app, on their phones, will allow patients to go to those lower-cost providers with their complete health records in hand. Plus, knowing their previous claims history and payments will let consumers compare actual prices with past charges turning them into better informed advocates for their care. 

Step 4: High-tech innovators need to put all that hard-won information into an app.

Now under development are apps that will aggregate prices, outcomes and patient records safely and securely, so consumers can have unobstructed, real-time, digital access to all their health information. Tech innovators are already inventing new technologies that will disrupt the current billing-and-coding centric Epic-like data systems (that benefit health systems, insurers, and EHR vendors), and instead offer EHR systems that are patient-and-doctor centric.
Fisher calls the transformation the “Uberization of health care.”

Although the release of the new interoperability rules is a giant step forward, the game isn’t over. Those of us fighting for broad price and record transparency are still playing four-dimensional chess with powerful institutions and special interests who will go to great lengths and expense to preserve the status quo.
Thus, we cannot spend too much time taking a victory lap. We have work to do. 

Marni Jameson Carey is the Executive Director of the Association of Independent Doctors, a national nonprofit, nonpartisan trade organization dedicated to helping reduce health-care costs by keeping America’s doctors independent. You may reach her at marni@aid-us.org.