OP-ED

Medicare Holds Out Promise of Health Record Access Revolution

By MICHAEL MILLENSON

This is the second of two posts from the Society of Participatory Medicine about the important policy issue regarding portability of our medical records. The first provided background, with link to a PDF of the comments SPM submitted, largely authored by Michael Millenson, who provides this essay for context.

The Trump administration is proposing to use a powerful financial lever to push hospitals into making the patient’s electronic medical record interoperable – that is, readable by other care providers – and easily available to patients to download and organize via an app.

The possible new mandates, buried in a 479-page Federal Register “Notice of Proposed Rule Making” from the Centers for Medicare & Medicaid Services (CMS), could become part of hospital “conditions of participation” in Medicare. That means if you don’t do it, Medicare, which accounts for about a third of an average hospital’s revenues, can drop you from the program.

In a comment period that closed June 25, we at the Society for Participatory Medicine registered our strong support for taking the administration rhetoric heard earlier this year, when White House senior advisor Jared Kushner promised a “technological health care revolution centered on patients,” and putting it into practice. The American Hospital Association (AHA), on the other hand, while professing its support for the ultimate goals of interoperability and patient electronic access, was equally strong in telling CMS it was going too far, too fast and with too punitive an approach.

Not surprisingly, however, the AHA did approve of CMS’s proposal to drop from hospital “Meaningful Use” rules various requirements, such as having at least one patient view, download or transmit their information electronically. SPM, on the other hand, said the requirements should be toughened. The original rule under the Obama administration had been 5 percent of patients before being weakened in response to industry protests. We felt that requiring hospitals to involve at least 10 percent of patients sent a message without being onerous.

What will CMS do? The public comments section available on the web wasn’t current, so we can’t be sure who weighed in, but when we looked we found no groundswell of consumer and patient support. Unfortunately, as I’ve written previously, patients do a poor job of wielding political power with the exception of the “disease groups,” clamoring for “the cure” or better insurance coverage. (Irony:  the photo above shows a 1968 “Youth For Nixon” brochure, wondering whether citizens were paying attention.)

SPM chair and co-founder Dr. Danny Sands and I met with CMS officials before filing our comments. We believe the agency wants to change not only hospital care, but the sharing of medical information electronically by doctors, ambulatory care centers and everyone else. However, by law the government has to follow a step-by-step process and be precise in its requirements.

What does “health information” mean? We think patients want the complete medical record. What is the meaning of “timely” access or “reasonable fees”? We think within 24 hours and no fee at all for electronic transmission. Will the record be readable by an API? We think it should be. Will interoperable truly be interoperable, and how quickly? We, obviously, want all of this to happen as soon as possible.

The AHA raised security concerns in relation to patient information readable by an API. However, Deven McGraw, a former senior privacy officer for the Department of Health and Human Services and now at Citizen, put those concerns into context in an email:

The notion that these security risks – yes, they exist – are either insurmountable or are too hard to address is directly contradicted by the actual experience of Apple and its provider partners who are actually doing this now.

Back in the early 1970s, when even hardline conservative President Richard Nixon was trying to be empathetic, a Sounding Board in the New England Journal of Medicine bemoaned the unjustified “suspicion” the women’s health movement expressed about doctors, but suggested a remedy. Giving patients “a complete and unexpurgated copy of all medical records, both inpatient and outpatient,” the article said, “would enable patients to be much more autonomous in making judgments and choices; less dependent, they would feel less paranoid.”

Nearing a half-century later, the good news is that many of today’s physicians support that access in the spirit of partnership, and even opponents wouldn’t dare call the request “paranoid.” The bad news is that while patients do have that access in theory, the reality is often much different.

As for the AHA, in 1973 it agreed to a patient a “bill of rights” guaranteeing patients such rudimentary information as their diagnosis and the names of all treating physicians! Even that grudging move, however, came only after the threat of Congressional action. Speaking of Congress: while the CMS public comment period is over, comments from your Congressperson and Senator, prompted by you, can still have a powerful impact.

I understand the hospital industry’s fears. If you make the patient’s record portable in an electronic format readable by any competitor or usable for analytics by a smartphone app, you lose control. Theirs is an economic reaction, and the CMS response should be equally bottom line: share information or lose the biggest chunk of your revenue.

It’s a remedy that’s just what the doctor – I mean, the patient – ordered.

Michael Millenson is a patient safety advocate and the president of Health Quality Advisors. This piece was first published at the Society for Participatory Medicine.

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williamivorHealthViewXGladysHadamjulesmbushkin Recent comment authors
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williamivor
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williamivor

Today, technology is leading the revolution in patient care. It is helping providers move from volume-based to value-based care. Healthcare technology is changing fast. Technology can help to connect physicians, nurses, and clinical staff; Health,fitness

HealthViewX
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HealthViewX

Good read. Today, technology is leading the revolution in patient care. It is helping providers move from volume-based to value-based care. Healthcare technology is changing fast. Technology can help to connect physicians, nurses, and clinical staff; streamline their workflows; automate routine tasks; and ultimately, improve clinical outcomes. Solutions like patient referral management, chronic care management, care management, etc are required today for better patient care.

GladysH
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GladysH

Great read.

adamjules
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adamjules

With globalization and advancement in technology, things are changing really fast, which has led to a new trend known as mobile healthcare. Most of the medical billing companies using this technology for the patients records and stuff.

mbushkin
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mbushkin

In my experience talking with docs and hospital administrators, many in candid-but-off-the-record comments refuse to embrace any system or requirement that makes a patient’s records easily and cheaply available to the patient. Why? Because under present practices, providing copies of records is an important income generator. So what’s the solution? How do we get care providers to willingly give patients their records? The answer’s not rocket science. We have to provide them with a new revenue source that replaces or exceeds the old. We do just that with our patient-centered MedKaz® personal health system! When a patient sees a provider,… Read more »

Adrian Gropper, MD
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Adrian Gropper, MD

A renowned health ethicist weighs-in on Twitter https://twitter.com/EeHRN/status/1016927182936006656

Adrian Gropper, MD
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Adrian Gropper, MD

Michael, Your comments are well meaning and constructive, but naive. To those of us that grew up in the health IT business and understand regulatory capture first-hand, your comments are more about emotion than solution. The issue is money and the monetization of health data. As long as patients are second-class citizens and middlemen in how the patient data flows the problems you are trying to fix will remain. The industry will keep saying “it’s too hard”, “it’s a patient-safety issue”, “we need to solve patient-matching”, “let’s turn clearing houses into HIPAA covered entities”, “we’re sharing with Apple, isn’t that… Read more »

Barry Carol
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Barry Carol

As a patient, I routinely ask for hard copies of my test results including imaging and blood tests, surgery reports, etc. which I file in three ring binders and can make available to other providers that I may see at a later date or send to organizations like Medic Alert for them to store on my behalf. The biggest appeal of interoperability, from my perspective, is when I need care outside of my home region, especially on weekends. I’m not sure I understand the distinction about who actually owns the data but I think patients should always have full access… Read more »