Once upon a time—and you know when I start with those four words, I’m taking you down a retrospective path—medicine reflected a sacred relationship between a patient seeking care and the physician who had the knowledge and skills to provide that care. Do you see where I am going?
That sacred relationship was based on caring and compassion and trust between two people: doctor and patient. The vulnerable patient was often obviously concerned about some issue, and the physician was viewed with almost godlike powers to comfort, to heal, to exorcise those demons of illness from the suffering individual.
Medicine historically (please note my use of this word) was viewed as an existential art where the thoughts and approach of the physician were expressed in the written health record.
I vividly recall the handwritten notes in ink by some of the most esteemed clinicians in the world, during my practice over forty winters at Mayo Clinic. The patient notes archived in the private folders, on paper, were crisp and targeted on the major issues. These notes had a laser focus on the patient’s major concerns.
An example would be this one: “46-year-old homemaker with mass in the breast. Undoubtedly cancer, biopsy in AM. Discussed.”
Today, this note would be totally unsatisfactory because it does not include the key elements that are crucial for insurance and Medicare reimbursement. But let us fast-forward to where we are today in 2023.
The Electronic Health Record Changed Everything
The healthcare record that had been viewed as a sacred series of documents almost with a religious and spiritual dimension that described a patient, the ailment, and the thinking of the physician, well, no longer. These are cold computer printouts with responses prompted by programs, boxes to be checked, fields to be filled in (whether needed or not) just to advance to the next tiresome screen.
Those hallowed records once thought of as gold could only be reviewed by the licensed, credentialed healthcare professionals who would be caring for that patient. Then, anyone who had any contact with that record had to sign a form attached to those records much like signing out a book from the library. Somber, relatively joyless administrators clutched these records to their bosoms like a mother caring for a sick child. The records were ceremoniously handed on to the next provider with an almost magical demeanor.
Today? A whole different ballgame.
Following the passage of the 21st Century Cures Act in 2015, patients were given a legal right to access their records. And providers as well as patients and families need to understand the power, the presence, and also the peril of these documents.
Not that patients could never see their records, they could. By requesting and copying and paying and mailing. The introduction of the electronic medical record (the transfer of those meticulously handwritten paper files to computer) further complicates, streamlines, and depersonalizes the medical record.
And who’s seeing your cholesterol results and mammograms and doctor notes? Anybody with access to the healthcare system, including the insurers.
So is access really a big deal?
Yes, this is a very big deal from a number of perspectives with pluses and minuses.
Here is the good news:
Opening medical records to patients on the patient online portal demystifies the practice of medicine. Patients can kick the tires, look under the hood, pull back the curtain, and gain insights into the decision-making process that has life-and-death implications for the patient. The record demonstrates how the provider processes the history, the physical examination, and myriad imaging interventions and blood studies to arrive at a diagnosis, which will hopefully lead to the appropriate treatment.
In addition, by accessing their record online, patients are empowered to participate in their healthcare decisions. Okay, so far so good. But not so fast. Stay with me on this one.
Today’s electronic record can be accessed by multiple stakeholders: The insurance companies who paid the bill based upon the services provided. The systems and procedures and quality experts who access records to be certain that administrative and state-of-the-art methods are in place for safety. And of course, every provider is aware of the looming shadow of the attorney who may access records to assess the appropriateness of care.
When the physician types in or dictates that patient note into the record, each of these stakeholders must be recognized. So the patient—and we are all patients—need to be aware that the record is written not only for the next physician but also for the other individuals who are figuratively in that exam room with you and your doctor.
Here is the dark side:
Exhibit 1. The patient is a 70-year-old homemaker accompanied by her daughter who was seeking care for some lapses in memory. The provider suggests a sophisticated PET scan of the brain, but the patient is concerned about the cost as well as the findings and respectfully declined. Not adversarial just straightforward, “I do not want the test.”
The provider might state in the electronic health record, “Patient is noncompliant.” This term has a negative implication and really does not reflect the patients thoughtful wishes. The patient is then labeled and the next provider can be prejudiced against that so-called noncompliant individual.
We as patients need to understand the implications of highly technical jargon that can be misinterpreted. In other words, a patient labeled noncompliant is negative. When, in fact, this patient was making a thoughtful decision.
Exhibit 2. Patient had an operation to remove a cancer from the liver and all remained well. A blood test called the alkaline phosphatase was minimally elevated and this was of no significance. The patient went online to see his electronic medical record and noticed a slight blip in the value late on a Friday night, searched on Google and read that this elevation could indicate an obscure bone cancer called multiple myeloma.
This condition has nothing to do with the patient, the blood study was a minor abnormality, and the patient spent a miserable sleepless weekend before calling the provider early on a Monday morning.
Without proper interpretation, patients can misread and misunderstand the information in their records. Best advice is to talk over the test results with the doctor before accessing anything online in many cases.
Exhibit 3. Patient is a middle-aged gentleman with a serious heart condition who seeks care from a cardiologist who was very thorough and conscientious. The physician writes in the note, “Patient alone. Family is not here.”
Not true. A supportive armada of brothers and sisters and a spouse of forty years were “there” but were in the waiting room. The patient was hardly abandoned, but the record had an extremely negative implication that could have tainted the next physician’s recommendation for treatment that might require family support.
Exhibit 4. Another challenging issue is bloat. Only this time it’s the medical records that have become bloated. Medical records are now 60% larger than they were just five or ten years ago.
Here’s what happens. A patient is admitted to an internal medicine service at a local hospital. The internal medicine resident writes an elaborate meticulously detailed history and physical examination. The patient is then referred to a subspecialist such as a gastroenterologist.
Rather than taking her own history and physical examination, which she should do, the specialist does a “copy and paste” maneuver to bring forward that initial note, along with all the errors, inconsistencies, and mistakes in that initial note. An exam weeks or months earlier may not apply to that the patient’s current situation.
Let the buyer beware. This commonly quoted law of caveat emptor places the burden on the buyer to be reasonably certain that a purchase is clear to the buyer. This also applies to our medical records.
Here are your key take-home points:
Read your electronic medical record carefully so that you can understand the logic, the reasoning, and the plan of your healthcare team. If a test is performed, if an imaging intervention has been done, were you contacted with the results and what are the next steps?
If you spot something factually incorrect such as labeling of a wrong body part (right leg versus the left leg), bring this to your healthcare provider because the record needs to be corrected.
Review your laboratory data as well as the imaging results. If there is a glaringly abnormal finding and this has not been discussed, you have a right to ask why.
Make certain that the medications listed in your record are actually the medications that you are now taking.
And most importantly, at the end of the day no one has a greater stake in your well-being than you as a consumer of healthcare. Be aware, be alert, be engaged. Your life depends on it.