Medicare Holds Out Promise of Health Record Access Revolution


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.

8 replies »

  1. 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

  2. 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.

  3. 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.

  4. 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, we pay the provider to upload a copy of their notes for the visit or test to our Server (it only takes seconds to do) from which the patient, in turn, downloads them to his/her MedKaz (and when they do, we erase them from our Server).

    This arrangement keeps the provider financially whole (a typical PCP can earn $50K more per year, a small hospital several $hundred thousand more per year, a big hospital tens of $million more per year). It does the same for payers: they save big $ when docs avoid medical errors and unnecessary tests, procedures, visits. And it saves patients deductibles and copays.

    Oh yes, it also gives docs the information they need to deliver better, coordinated, lower-cost care!

  5. 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 enough?”, etc…

    In order for clinical data to have an impact on health reform, it must flow as PATIENT-DIRECTED, not patient-mediated. For example, the 24 hour delay you are suggesting in your comment makes it uneconomical for many health service providers to compete and it makes decision support systems that would advise the physician or the patient at the point-of-care IMPOSSIBLE.

    I’ve been a member of SPM for some 5 years. That the society would send these comments without even mentioning it to me is disappointing. Patient Privacy Rights comments to this Medicare initiative were posted in THCB as well. http://thehealthcareblog.com/blog/2018/06/25/information-blocking-gropper-peel-weigh-in/ What does SPM have to say about that? Are we on the same team?

  6. 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 to their own records in any case. Patients should also be able to opt out of making medical records available to non-medical providers an entities including employers present, past and future and other organizations that are mainly interested in selling us their products or services.

    While I understand hospitals’ interest in maximizing their revenue, in part, by keeping as much care as possible within their system and keeping tight control over medical records, that’s a revenue and profit driven mentality as opposed to a patient-centered mentality. I think if hospitals and physician groups provide good patient-centered care and view patients as customers as well as patients, then revenue and profits should take care of themselves. If they try to control medical records too tightly and continue to oppose interoperability, it will ultimately hurt them in the marketplace if at least some of their competitors take a more enlightened approach to the treatment and handling of medical records.

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