October 6, 2022, was a landmark day for every single person who receives healthcare in the United States, and yet I’m fairly certain that if you asked 100 people, only a handful would know what you were talking about.
Medical data isn’t something the average citizen thinks about, until suddenly it’s not there or it is there but it's inaccurate or incomplete. But as a primary care doctor for more than 30 years and a long time proponent of electronic health records (EHRs), I think everyone should care about the ability to access and exchange electronic health data.
The risk of going into anaphylaxis shock in an emergency room because they gave you penicillin, not knowing you’re allergic to it, is a dramatic example – but a lack of information has many and far-reaching repercussions that are more subtle but impact the effective delivery, safety, coordination, and affordability of healthcare.
The federal rule prohibiting health information blocking went into full effect October 6. This Final Rule, issued by the Office of the National Coordinator for Health Information Technology (ONC) in 2020, implements provisions of the 21st Century Cures Act of 2016 and expands on the privacy provisions of the Health Insurance Portability and Accountability Act (HIPAA) of 1996.
While most commonly known as the federal law that required the creation of national standards to protect sensitive patient health information from being inappropriately disclosed without the patient's consent or knowledge, HIPAA also addresses the portability of health information.
Under these laws, for more than 25 years, we have been able to request access to our electronic health record information, but there was no requirement that physician practices, clinics, hospitals, and health systems had to honor those requests. But now there is.
If you want to understand what's been done to or for or about you, you can ask – whether it's your doctor, your pharmacist, or your laboratory – and they have to release your records. If they don’t and don’t qualify for an exception, meaning they can’t provide a reasonable explanation for why they can’t, there will be consequences.
The need to access health information is especially important when you are seeing a new provider, if you have changed insurance, moved, or you are seeing a specialist. Depending on how old you are or how much care you have required throughout your life, it could take a considerable amount of time and effort to get your new provider up to speed on your medical history, recent test results, current medications, etc.
With most medical records now digitized, the transfer of information from one provider to another might seem easy enough. But the fact is that, despite our best efforts, health data exchange is not the seamless experience it should be. A New York Times article from September highlighted this issue in “Very Harmful” Lack of Data Blunts U.S. Response to Outbreaks, noting that “major data gaps, the result of decades of underinvestment in public health, have undercut the government response to the coronavirus and now to monkeypox.”
Despite billions invested in the modernization of hospitals and health systems and the shift to electronic medical record keeping, exchanging comprehensive health data in a timely manner is still hampered by large gaps and obstacles.
With the new ban on information blocking in effect, one of these obstacles is eliminated. But others remain.
The 21st Century Cures Act’s other significant contribution to the frictionless exchange of healthcare data is the development of a national Trusted Exchange Framework and Common Agreement (TEFCA), which will establish a universal floor for interoperability across the country. Interoperability is the ability of different systems, devices, applications or products to connect and communicate in a coordinated way, without effort from the end user.
Sometime next year we can expect to see TEFCA operationalized with the designation of several Qualified Health Information Networks (QHINs) that will establish a “network of networks” for sharing medical information and a single “on-ramp” to eventually allow all types of healthcare stakeholders to exchange health data. by utilizing one of many health information networks that will be connected through the TEFCA framework.
If you remember when mobile phones were introduced, at first you could only call people who subscribed to the same network. Today, it doesn’t matter what kind of cell phone you use or which company you purchase services from – it’s all completely, 100 percent interoperable. And it is past time for medical data to flow as easily and seamlessly as it does through our mobile phone networks.
When this happens, it will radically change our ability to obtain care from the providers that are most convenient for us, at the best price, with the best demonstrated quality and should help to allow this country to enjoy both better and less costly healthcare, a goal that we can all look forward to.