The path to patient access of their medical records and information has been a cornerstone of the push to interoperability starting with HITECH and the final rules of the 21st Century Cures Act enacted in May of 2020. Allowing digital patient-directed information exchange to bypass middlemen in the same way that fax or postal service information exchange does not introduce a rent-seeking intermediary capable of censorship over the connection is the ultimate goal of interoperability.

Middlemen

Who are the middlemen? Simply put, they are everyone except the patient or the physician. Middlemen include hospitals, health IT vendors, health information exchanges, certifiers like DirectTrust and CARIN Alliance, and a vast number of hidden data brokers like Surescripts, Optum, Lexis-Nexis, Equifax, and insurance rating services. The business model of the middlemen depends on keeping patients and physicians from bypassing their toll booth. They have done everything in their power to make it hard for new ventures to compete without paying the overhead imposed by the hospital or the fees imposed by the EHR vendors.

In summary, patient-directed access is simply the ability for a patient to direct and control the access of information from one healthcare system to another “without special effort”. Most of us know what that looks like because most of us already direct transfer of funds from one bank to another. We know how much effort is involved. We know that we need to sign-in to the sending bank portal in order to provide the destination address and to restrict how much money moves and whether it moves once or every month until further notice. We know that we can send this money not just to businesses but to anyone, including friends and family without censorship or restriction. In most cases today, these transfers don’t cost anything at all. Let’s call this kind of money interoperability “without special effort”.

Rent Seekers

But healthcare isn’t banking because non-patient centric medicine has fertilized layers upon layers of middlemen that we, as patients and doctors, do not control and sometimes, as with Surescripts, don’t even know exist.

You might say that Visa or American Express are middlemen but they are middlemen that compete fiercely for our consumer business. As patients we have zero market power over the EHR vendors, the health information exchanges, and even the hospitals that employ our doctors. Our doctors are in the same boat. The EHR they use is forced on them by the hospital and many doctors are unhappy about that but subject to gag orders unprecedented in medicine until recently.

This is what “information blocking” means for patients and doctors. This is what mandating “without special effort” means. The hospitals and middlemen will have two years to fix information blocking. That brings us to 2022. Past experience with HITECH and Washington politics assures us of many years of further foot dragging and delay. We’ve seen this before with HIPAA, misinterpreted by hospitals in ways that frustrate patients, families, and physicians for over a decade.
The one thing hospitals do care about is Medicare payments. Some of the information blocking provisions of the draft rule making are linked to Medicare participation. These have been kept and enforced after the final regulations.

Changing the cost paradigm

Meaningful competition requires multiple easy choices for both the patients and the prescribers as well as transparency of quality and cost. This will require a reversal of the strategy that allows large hospitals and their large EHRs to restrict the choices offered and to obscure the quality and cost behind the choices that are offered. We need health records systems that make the choice of imaging center, lab, hospital, medical group practice, direct primary care practice, urgent care center, specialist, and even telemedicine equally easy. “Without special effort”.

The fix requires a clear understanding that middlemen are optional and the interoperability path that bypasses the middlemen as “data follows the patient” is the default and “without special effort”.
Entrepreneurs, private investors, educators, and licensing boards stand ready to offer patients and physicians innovative services that compete with each other. To encourage this private-sector investment and provide a visible win to their constituents, Federal health architecture regulators and managers, including ONC, CMS, VA, and DoD would do well to emphasize the Regulations in a way that makes the opportunity to compete on the basis of patient-directed exchange as clear as possible. Give patients and doctors the power of modern technology. “without special effort”

(Source: Adrian Gropper, MD)