Patients finally gaining new access to medical records and doctors’ notes
Millions of Americans may be finding that their doctors routinely refer to them with terms like SOB and BS. But patients will be better off with this knowledge, once they learn how to translate medical abbreviations.
The Associated Press reported that hospitals and health care systems nationwide quietly are complying with deadlines, and, under a 2016 federal law, are opening up convenient, fast access to patients to not only view and access their electronic health records but also physicians’ notes about their care. As the AP wrote:
“If you already use a patient portal such as MyChart to email your doctor or schedule an appointment, you may soon see new options allowing you to view your doctor’s notes and see your test results as soon as they are available. You may get an email explaining where to look, how to share access with a caregiver and how to keep other eyes off your information. Many people won’t notice a change. About 15% of health care systems already are letting patients read doctor notes online without charge. That means about 53 million patients already have access to their doctor’s notes.”
But millions more patients, starting Nov. 2, saw their medical record access increase, including with revelations about physicians’ common abbreviations about them and their care, as in SOB (short of breath) and BS (bowel sounds) — not to mention more arcane but common ones like WDWN (well-developed well-nourished).
More seriously, seeing their doctors’ notes can be crucial for patients, as the AP reported: Patients do find mistakes in their notes, and some errors are serious enough to affect their treatment, research has found.
“’A clinician has eyes on thousands of notes, but a patient has eyes only on one, so it has powerful safety implications,’ said Cait DesRoches, director of OpenNotes, a Boston-based group working for greater access to patient notes. [Britta] Bloomquist, [a] Minnesota patient, learned that it’s difficult to fix inaccuracies in her medical record. Some of her notes say her surgery was on her left leg. It was on her right. She said she reported the error several times, but it hasn’t been fixed.”
For patients and their advocates, the goal of greater transparency and access to electronic health records has been fraught, and it has taken far longer than optimists had wished.
Patient advocates, as part of the Affordable Care Act, 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 be a major way to improve care. They argued that software could flag prescription errors or wasteful and harmful procedures. Idealists thought that e-records would be more accessible, portable, and easily shared. They also envisioned them 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 dominate the electronic health records 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 should not be app based.
The Trump Administration, to its credit, has pushed to make patient records easier to get.
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 look fast and first at the individual’s health record. The information therein does not belong to care givers 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.
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. This is becoming a significant worry for hospitals and health care systems and you may wish to talk with your doctors and care giving institutions to see what steps they may be taking and what public support they may need to deter hackers.