The Trump Administration, to its credit, has put out finalized new rules that aim to give patients greater access to and use of their all-important medical records, now mostly captured and contained in electronic form.
Federal officials had to battle a handful of wealthy, powerful corporations that own and install proprietary software and computing systems to try to help patients.
They also instantly created major new concerns with their “interoperability” regulations for doctors and hospitals:
If systems for electronic health records (EHRs) can be made more “interoperable” — so they talk much better to each other, sharing data and information with ease and convenience — will they also become a privacy menace for patients, giving yet other tech giants invasive use of highly personal, medical information on individuals? If EHRs make personal information-sharing too easy, will this lead to even more destructive security and privacy breaches? Will your medical information be too readily bought and sold by companies, with or without your consent?
As Americans have discovered while watching Republican politicians try to kill the Affordable Care Act, Obamacare touched on many more parts of the U.S. health care system than just insurance. Patient advocates, as part of the ACA, got the federal government to pour tens of millions of dollars into electronic systems, so doctors and hospitals, in theory, would get rid of unreadable, difficult to use, and hard to share paper files containing the records of medical services received by patients.
Advocates also hoped that electronic systems would not only be more convenient and efficient, they also saw them as a major way to improve care. They hoped that software could flag prescription errors or wasteful and harmful procedures. Idealists thought that electronic records would be more accessible, portable, and easily shared — in convenient and at lower costs, especially for patients. They also envisioned this as increasing the efficiency of care, eliminating duplicative testing or diagnostic procedures.
Alas, the processes and systems became more complicated, burdensome, and even threatening to patient care than reformers anticipated. A handful of corporations rose up to dominate the industry — infuriating patients, doctors, and hospitals with their products, which became complex, cumbersome, and carrying sky-high costs.
Patients, including Alex Azar, the head of the sprawling and powerful U.S. Health and Human Services agency, discovered that electronic records became more difficult and expensive for patients to get. When patients moved among hospitals and doctors for care, they often found themselves lugging hardware, including discs, drives, and printouts. Or they faced maddening, incomprehensible discussions about electronic formats or materials that would be issued by one doctor or hospital but not usable at another.
In the meantime, of course, consumers saw myriad different software applications or apps spring up on smartphones or electronic tablets. These handled an array of information and services with speed and ease. Companies like Apple, Microsoft, and Google — seeing the huge money in health care — pushed with patients to ask why information like the history of patients’ illnesses, prescriptions, laboratory results and sometimes genetic data shouldn’t be app based.
This is a path that tech titans and patients now can pursue, under the new federal regulations. As the Wall Street Journal reported:
“The main new rule sets technical standards that will allow app developers or others with authorization to connect digitally with hospitals and doctor offices and pull data such as medications, lab test results and vital signs like blood pressure. One upshot: Consumers might be able to organize information from all the different doctors and hospital systems they visit, as well as their health insurers, in one tool on their smartphones. ‘It will be absolutely transformative,’ said Ken Mandl, a Harvard professor who directs a health-informatics program at Boston Children’s Hospital.”
There will be new concerns with new systems, as the newspaper also underscored:
“[The new federal] rules will also likely amplify a debate over patient privacy protections, which have drawn increasing public attention as hospitals strike data-sharing deals with companies such as Google and Microsoft. As patients begin more easily offering up their health data to apps, they will be navigating a complicated privacy dynamic. The main federal law that protects health data, the Health Insurance Portability and Accountability Act, or HIPAA, applies to physicians and health-care companies, as well as third parties that work with them, such as the technology firms with which hospitals share data. Tech firms that get health data directly from consumers — or from doctors or hospitals that release it based on a consumer’s authorization — aren’t generally subject to HIPAA. They are overseen primarily by the Federal Trade Commission, which focuses largely on whether companies adhere to their own privacy policies. ‘There is a legitimate concern that people will be sharing their sensitive health information with organizations that can use and sell that information however they want,’ said Joy Pritts, a consultant who is a former federal health privacy official.”
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.
For patients, there is much at stake in what may seem like arcane health care software or computing rules, 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.
We’ve got work to do to ensure patients get the highest, best, and easiest use of their own medical records — and that they are protected well, so they stay private.