For U.S. patients, the answer is likely no unless you’ve paid fees, invested in a fax machine and jumped through a number of hoops. Different providers likely use different digital portals, leaving patients with a crazy quilt of platforms to navigate. For those who have complicated health histories, it’s a challenge to pull together important information like imaging tests and lab reports when they visit a new doctor.
But that should get easier because of new rules that took effect in October under the 21st Century Cures Act. It gives patients full access to their own medical records, in a digital format. This means providers have to make patients’ records – all of them – available, digitally, upon their request. The process must be free, timely and secure.
“To think that we actually have greater transparency about our personal finances than about our own health is quite an indictment, ” Isaac Kohane , a professor of biomedical informatics at Harvard Medical School, told STAT News . “This will go some distance toward reversing that.”
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A Brief History of Medical Records When medical records started to go digital in the 1990s, regulators soon realized that extra protections were required to protect them. Under HIPPA, the Health Insurance Portability and Accountability Act of 1996, a rule called the Standards for Privacy of Individually Identifiable Health Information (the “Privacy Rule” for short) was put in place primarily to protect people’s health records from outsiders.
The rule also sought to allow “the flow of health information needed to provide and promote high quality health care and to protect the public's health and well-being, ” explains the U.S. Department of Health and Human Services .
But even though patients technically were allowed to access their records, they often found insurmountable barriers labeled “information blocking.” It was legal for providers to charge fees, mandate that information only be sent by fax and require requests be made in person.
Do Electronic Health Records Improve The Quality Of Care?
The Future of Medical Records Experts are hopeful that the new rule will give patients more power over their own health and result in better care. For instance, when you have access to your full records, it can be easier to switch providers, or add a new specialist. It can also make it easier to share information with researchers, if you want to do so.
A number of organizations are already helping patients organize what could be a deluge of information. For instance, websites like “Where Is My Medical Record? ” offer advice about rights and procedures for getting your records.
Advocacy groups like Open Notes are helping patients navigate these systems, while organizations like Ciitizen are offering tools for organizing records. As Ciitizen puts it: “Controlling all your records in one place makes it easier for you to get second opinions, access clinical trials, get personalized treatment, coordinate with caregivers and contribute to research.”
Medical Care Shifting To Electronic Data Files
Medical Records Around the World Though the new rule applies only to people in the U.S., similar efforts are underway in other countries that would grant patients access to their own health records. By 2017, Canada, Finland, France, Iceland, New Zealand, Norway, Scotland, Singapore and Sweden had announced plans to provide citizens access to their health data . Just three countries, Denmark, Estonia and Australia, had systems fully in place by that year.
More recently, the European Commission adopted a formal recommendation that will allow patients to more easily access their medical records across country borders . The new recommendation builds on the General Data Protection Regulation (GDPR, ) which passed in 2016 and granted citizens the right to access their personal data.
Experts and patients alike are hopeful that more transparency and information sharing will be a good thing for patient outcomes. As efforts come to fruition, some researchers say advances in technology could help bring about new insights just by looking at existing records. For example, artificial intelligence and machine learning could spot trends in written doctor visit notes once they’re digitized and accessible.
Emr: Electronic Medical Records
It can be confusing and even a little awkward to read a doctor’s notes, which are often a kind of shorthand rarely written with patients in mind. An article in the Journal of the American Medical Association offers some advice to patients who receive doctor visit notes in their medical records.
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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.
What Is The History Of Medical Records?
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.”
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).
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“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
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The technological hurdles are also considerable. Policymakers
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