A top U.S. health official can’t get his. Which is why we need records reforms.

alexahhs-150x150Federal regulators may be on the brink of not only protecting but also advancing patients access and use of a key component of their care: their electronic health records. Or will bureaucrats fold up in the face of a muscle campaign by corporate interests and hospitals?

To its credit, the giant Health and Human Services agency has emphasized that it is moving forward in its announced plans to prepare new regulations on so-called EHRs, pressing patients’ rights and newer, and potentially more nimble tech firms’ abilities to make the information in the records more accessible and helpful.

But Epic, the giant software company that has installed electronic systems in hospitals and health systems nationwide — often for billions of dollars — is leading resistance to the new rules. It has convinced dozens of institutions and groups, some sizable, to lobby officials to oppose this federal intervention.

The older tech giants in this field say it will cost hospitals (and thereby patients) too much, in time and, resources to carry out revisions of software systems, already much reviled, notably by doctors and nurses who use them most, for their complexity and difficulty.

For patients, there is much at stake in what may seem like internecine bickering in health care, as expert commentators have argued in at least two separate and recent online posts.

One of the first and foremost thing that patients can do to protect themselves and improve their medical care, I have found, is to get and pore over their own medical records.

In my book, “The Life You Save, Nine Steps to Finding the Best Medical Care – and Avoiding the Worst,” I list getting and reading these documents for patients as step one to improve your medical care. Seeing and studying your medical record can provide you with invaluable information and insights about your health and conditions, their sustained care, and how well you and your doctor are communicating and understanding each other about it. You’ll learn a ton about how good your doctor is or isn’t. You’ll get an eye-opening and new view of your doctors and your care. Talk to your providers, correct errors and misapprehensions, and stay atop those records to ensure, for example, that doctors don’t order duplicative tests or procedures, or that nurses and other clinical staff don’t list wrong medications or treatments

Doctors and hospitals may throw up obstacles to your getting your own records. Don’t be deterred. And don’t let others compromise the privacy of your health records, electronic or otherwise. Accessing patient records, alas, isn’t as convenient as it is supposed to be and often takes too long. But Uncle Sam and the law are on your side, in insisting that the process should be easy and low-cost.

Still, researchers keep finding problems, as Harlan Krumholtz, a doctor and top-notch health researcher at Yale found. As he wrote in a recent Op-Ed for Stat, a science and medical news site:

“Although laws clearly articulate the rights of people to access their digital health records, few people find that the system really works for them. My research team and I recently conducted a secret shopper study of top U.S. hospitals and found widespread violation of people’s rights to access their health information. We found that hospitals often provide patients conflicting information about requesting their records and, in many cases, give blatant misinformation or limited information. The cost for obtaining a 200-page record was as high as $542, even though a flat rate of $6.50 was proposed for digital records. There were often delays, incomplete records, and limitations in the ways that people could receive their data. I have personally heard stories about the travails of people who tried to get personal health information. One woman, one behalf of her hospitalized mother, sought copies of her mother’s health information from a major New York City hospital. After much back and forth, she was finally told that she could not get the digital data. Instead, a large box with hundreds of disordered pages showed up, along with a bill for $500. One hospital executive actually told me that hospitals did not like people easily getting their records because they could more easily transfer their care to other institutions.”

As Krumholtz and others have reported, the resistance by Epic and select hospitals — please note that some of the largest and most important institutions in the country, especially those with big Epic systems, haven’t opposed EHR regulation changes — comes at a problematic moment in tech terms.

An array of tech enterprises, small and giant, have watched not only the relentless outcry about existing EHRs but they also see significant revenue potentials and they are ready to leap ahead with potentially major improvements for medical practitioners and most importantly patients. If they can convince regulators to ensure that the records systems are “interoperable” — that is they do what many cannot now do, which is to communicate with each and share data faster and more easily — more standardized and with “open” rather than proprietary software and codes, they say that patients, for example, could not only more conveniently access their health information, programs and devices could make data more useful. Translation: There are tons of apps that patients might want to use to benefit their health, launching them on laptops, tablets, smart phones, watches, and other wearables.

This gee-whiz vision has its own challenges and concerns, of course. Regulators say they will move with due care to ensure, for example, that rigorous privacy protections are included for oversight of EHRs and their related information. No one wants security breaches of some of the most private information imaginable. The federal government also will be watching to safeguard precious patient data, so it doesn’t unfairly enrich Big Pharma, medical device makers, or other health care enterprises.

Good luck with that? The option is for software vendors, hospitals, and medical personnel not only to keep howling about clunky existing EHR systems but also for patients to be shut out of their own valuable information and to hinder innovation that could be beneficial.

In my practice, I see not only the harms that patients suffer while seeking medical services, but also their struggles to access and afford safe, efficient, and excellent medical care — and to understand and have control of what’s happening to them and their loved ones in a daunting system. Health care has become an ordeal for patients due to its skyrocketing complexity, uncertainty, and cost for treatments and prescription medications, too many of which turn out to be dangerous drugs.

Doctors make it their prime order of business in taking on a patient’s care to tackle a singular chore — to scan fast and first the individual’s health record. The information therein doesn’t belong to caregivers or any system — it is patients’ “property.” And if it so crucial to patients’ care, they should not only own it but be able to get it, see it, and, yes, to have it explained to them, in detail, as part of their fundamental right to informed consent. This means they are told clearly and fully all the important facts they need to make an intelligent decision about what treatments to have, where to get them, and from whom.

The high-tech wunderkind who want to cross over and play roles in how patients get medical care need to understand and embrace fundamental concepts like these — or be kept out or booted out of the field.

Health care advocates may have myriad other policy disagreements with Seema Mehta, the head of the Centers for Medicaid and Medicare (CMS) and her boss, HHS chief Alex Azar. But they have been right on this matter. As Fierce Healthcare, an industry information source, reported, Azar has spoken of his own health records in criticizing opposition efforts to stymie efforts to keep materials open and improve their use.

“Scare tactics are not going to stop the reforms we need,” Fierce Healthcare quoted him as saying.

Azar also reported this:

“In the past month, I’ve spent hours trying to get access to my health records and have not had my call returned to get into them. There obviously is no preferential treatment here. This is equal opportunity frustration. This is not just frustrating as each of these issues poses an opportunity for medical error.” While receiving treatment at a hospital, Azar said physicians wanted to switch him to a more powerful statin … and he declined. “That information wasn’t incorporated into my record. That night, I got some pills, including the drug that I did not consent to take.”

OK, Mr. Azar, as the saying goes, don’t just get angry. Please help patients get ahead of private interests to protect and improve their health care.

Patrick Malone & Associates, P.C. listed in Best Lawyers Rated by Super Lawyers Patrick A. Malone
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