Seema Verma, administrator for the Centers for Medicare and Medicaid Services (CMS), was returning to Washington, D.C., after a weekend with her family when she received a panicked call from her daughter. Her family had been waiting for a connecting flight home to Indianapolis, Indiana, when Verma’s husband collapsed and stopped breathing.
“If it weren’t for the bystanders and the first responders at the airport, my kids would’ve watched their father die,” Verma told an audience at the Healthcare Information and Management Systems Society (HIMSS) conference in March 2018. Unfortunately, because his health care records weren’t immediately available, those first responders and the medical team at the Hospital of the University of Pennsylvania knew almost nothing about his medical history. Verma tried desperately to round up the information they needed, making calls back to her husband’s doctors in Indianapolis. Over the next week, doctors eventually discovered the cause of his cardiac arrest and successfully treated him. But even when her husband was finally released, getting the records from his weeklong treatment transferred to his doctors back home was a struggle.
Verma used her dramatic personal story to introduce a new CMS initiative, called MyHealthEData. Its goal: to make Medicare and Medicaid patients’ medical records far more accessible, both to physicians and patients, and avoid the uncertainty, delay, unnecessary tests and procedures, and needless dangers her husband faced. By giving patients more control over their own medical data, she told conference attendees, MyHealthEData will help patients make better health decisions and even spur innovation and advance research to cure diseases, which would drive down costs and improve health outcomes.
Virtually everyone agrees that making electronic health records (EHRs) fully portable would mean better care at a lower cost. But while the goal of MyHealthEData is laudable, critics were quick to point out that the announcement fell far short on details about how it would be accomplished.
There’s good reason for skepticism. The health care world has been talking about portability of EHRs for almost two decades. “And we’re a long way from that goal,” says Julia Adler-Milstein, PhD, associate professor and director of the Center for Clinical Informatics and Improvement Research (CLIIR) at the University of California, San Francisco, and an internationally-recognized expert on health care IT. “All you have to do is look at how many medical offices still use faxes to know how far we still have to go.”
Why has it taken so long? And what needs to be done to make real progress on portability?
The challenge of interoperability
The cornerstone of making patient’s health records portable is interoperability — the ability of one EHR system to talk to another and allow patients and providers to exchange health care information with a minimum amount of time and effort. The goal of interoperability was first enshrined in policy in the 2009 Health Information Technology for Economic and Clinical Health (HITECH) Act, which specified that one of the required capabilities of a certified EHR system was “health information exchange.” The 21st Century Cures Act, passed in 2016, required that certified EHR systems be interoperable in order to be considered Certified Electronic Health Record Technology (CEHRT).
“That hasn’t happened,” says John Meigs, Jr., MD, board chair of the American Academy of Family Physicians. “For the most part, the different EHR software programs available don’t talk to each other and in fact make it extremely difficult to exchange data across systems.”
Critics are quick to blame the vendors who make and sell EHR systems, which have a competitive incentive to keep their programs proprietary. But while vendors certainly shoulder some of the blame, Adler-Milstein thinks there are more fundamental reasons we haven’t been able to make EHRs portable. Probably the biggest, she says, is the sheer complexity of the health care industry. “People like to use the example of financial information. We’re able to go to an ATM anywhere in the world and use a debit card to get cash from our account. Shouldn’t we be able to access our medical records just as easily?” she notes. “But medical records are much more complex than financial records. There are unique confidentiality issues … and very complex legal and regulatory issues, with many stakeholders involved.”
“For the most part, the different EHR software programs available don’t talk to each other and in fact make it extremely difficult to exchange data across systems.”
John Meigs, Jr., MD
Board Chair, American Academy of Family Physicians
The technological hurdles are also considerable. Policymakers and vendors have to agree on technical protocols and ways to implement standards at a time when new technologies and platforms are constantly changing.
Finally, achieving interoperability has been hampered by a lack of strong incentives to make it happen, says Adler-Milstein. “What we’re talking about is a huge undertaking. You really need to have strong regulatory and business incentives in place to create market demand for interoperability, and we haven’t seen that.” Regulatory incentives have been weak at best, and business incentives are virtually nonexistent.
In reality, there are often distinct disincentives to interoperability, including that vendors don’t want providers to be able to easily switch to a competitor’s EHR platform.
The challenge of usability
Interoperability is only part of the challenge, though. Inputting information into a health information system and retrieving it when it’s needed has to be simple and efficient. As most front-line providers know, we’re far from that.
“Documentation guidelines require physicians to spend far too much time documenting unnecessary information and re-entering the same information over and over again,” says Meigs. “Many of the requirements are over 20 years old. They were designed for billing, not taking care of patients. They are an enormous and unnecessary burden on physicians, and they make it very difficult for anyone to review an EHR and find out quickly and efficiently what they actually need to know about a patient.”
Adding to the burden is the fact that many EHR systems automatically generate large amounts of boilerplate text into patient records, creating what Don Rucker, MD, chief of the Office of the National Coordinator for Health Information Technology., recently dubbed “antimatter of information” or what has long been known as “note bloat.” Most EHR systems allow doctors to cut and paste information easily — a feature that may offer convenience for inputting data, but that can also end up filling a patient’s health record with vast amounts of additional and often unnecessary content. For patients without medical training who are trying to understand and control their own health records — one of the stated goals of MyHealthEData — the challenge is even more daunting.
The path forward
The launch of MyHealthEData is a welcome sign that federal policymakers are zeroing in on portability. And there have been other encouraging signs that concrete changes are being made. In July, the CMS announced proposed changes to documentation requirements for outpatient and physician office visits, and also proposed major payment changes. The documentation changes are designed to ease some of the burden on physicians — and potentially make EHRs more useful. For example, physicians would no longer be required to document a patient’s family, social, and medical histories every time they see the patient, which has been the case. Instead, they would only be required to document aspects of the history that have changed. (While the documentation changes are welcomed, there is concern that the proposed payment changes would have a negative financial impact on physicians.)
CMS also announced the launch of a Data Element Library (DEL), a new CMS database that supports the exchange of electronic health information. For example, it will allow the public to access the specific types of data that CMS requires post-acute care facilities, such as nursing homes and rehabilitation hospitals, to collect. Blue Button 2.0, which already allows Medicare patients to download and print their health records, will also aid portability as developers work with Medicare to create apps that will make patients’ records shareable. At a White House conference last week, Verma announced that more than 600 developers had signed on to the initiative.
“Connecting these systems so that records can be exchanged seamlessly from one provider to another, wherever they are, is a complex task. But the benefits, in terms of improved patient care and safety at lower cost, will be enormous.”
Janis Orlowski, MD
AAMC Chief Health Care Officer
But much more needs to be done, experts agree. Frontline providers understand that health information portability is critical to the best patient care and should be a priority; at the hospital administration level, however, interoperability and portability aren’t often a top priority given the cost and complexity involved. “There’s much more incentive, at the moment, to take that money and build a new cardiac center, which can generate a profit, than to invest in EHR interoperability,” says Adler-Milstein.
Moving forward, both regulatory and business incentives will have to be better aligned to encourage interoperability, she insists. And that alignment is going to have to be driven by policymakers, the stakeholders who have the strongest interest in promoting interoperability.
“It’s worth remembering that we’ve come a long way from the era of paper records to the era of electronic health records,” says Janis Orlowski, MD, chief health care officer at the AAMC. “Connecting these systems so that records can be exchanged seamlessly from one provider to another, wherever they are, is a complex task. But the benefits, in terms of improved patient care and safety at lower cost, will be enormous.”