Patients, for their own protection, long have needed to secure copies of their medical records and correct inaccuracies they find — a safeguard that has grown even more vital as research builds about unacceptable biases that doctors and others may show in their recorded observations about those in their care.
In two separate, published dives into tens of thousands of medical records, researchers found that black patients were 2½ times more likely than their white counterparts to be labeled with at least one negative description, and African-Americans with diabetes were more likely than whites to be labeled with medically disapproving terms including nonadherence, noncompliance, failed or failure, refuses or refused, and, even combative or argumentative, the New York Times reported.
Dr. Dean Schillinger, who directs the Center for Vulnerable Populations at San Francisco General Hospital and Trauma Center and who was not involved in the studies, told the newspaper this of the disconcerting descriptions found in patient records:
“In medicine, we tend to label people in derogatory ways when we don’t truly ‘see’ them — when we don’t know them or understand them. The process of labeling provides a convenient shortcut that leads some physicians to blame the patient for their illnesses.”
Doctors and others who jot information into patient records may think their remarks are fair and objective. But Michael Sun, lead author of the study and a third-year medical school student at the University of Chicago’s Pritzker School of Medicine, observed of the prevalence of negativity directed at black patients, couched in medical observations:
“It’s not so much whether you should never use these words, but why are we applying these words with so much more frequency to black patients? Do we really believe black patients are truly not compliant, so many more times than white patients?”
One of the studies, published in the journal Health Affairs, found this troubling occurrence in patient records:
“The researchers found that outpatient clinic records were far less likely to contain the negative comments, compared with records from hospitals and emergency rooms, perhaps because outpatient providers have ongoing relationships with their patients and are more familiar with their circumstances. Regardless of race, unmarried patients and those on government health plans like Medicare and Medicaid were more likely to have negative descriptors applied to them than married or privately insured patients. Patients in poor overall health, with several chronic underlying health problems, were also twice as likely to have negative adjectives in their medical records, the study found.”
Doctors could look past common terms in describing patients in unhelpful ways, thereby also improving their care, the researchers suggested:
“Rather than assume the patient is lacking in motivation or disengaged … the medical team should inquire whether the patient is facing financial barriers, transportation difficulties, or other obstacles to adhering to treatment, such as illiteracy or trouble with English.”
Dr. Gracie Himmelstein, the paper’s first author, a resident physician at UCLA, and a doctoral candidate at Princeton University, underscored the importance of accurate medical records in patient care, especially as the documents or electronic files can set the tenor for the caregiver relationship and treatment. She told the newspaper this:
“Before I even go meet a patient in the emergency room, the first thing I do is call up their record and read through the previous admission notes and get a sense of their history. I’m looking to see what their medical problems are, but as I do so, I’m also reading a narrative of their interactions with previous physicians.”
Schillinger said the research should raise high concerns, the New York Times reported:
“The labels have consequences, Dr. Schillinger warned. While some of the notes convey critical information, the terms used can cloud the physician’s — and future clinicians’ — judgment and decision-making, diminishing their compassion and empathy. And that may cause patients to lose trust in their providers. ‘Patients whose physicians tend to judge, blame or vilify them are much less likely to have trust in their doctors, and in the medical system overall,’ Dr. Schillinger said. ‘Having health care providers who are trustworthy — who earn their patients’ trust by not judging them unfairly — is critical to ensuring optimal health and eliminating health disparities.’”
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 is 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 vital 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 or e-files 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 getting your own records, many of which are available to you on “patient portals” of hospitals and health systems. 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.