Medical Transparency - A Double-Edged Sword?

EditorsNote: Alan Feren M.D. FACS  is a1970 Graduate of Tufts University School of Medicine with more than 50 years of experience as a practicing physician and surgeon, medical treatment guidelines author, medical director, chief medical officer, and patient education consultant. As always, the opinions, positions, statements, and manner of expression in blogs are always those of the individual blogger and not necessarily those of GNA. 

Creating a partnership with your physician is important to get the best care and clinical outcome. You should and deserve to be well informed about your condition, your treatment plan, and what you need to do for better management of your own care. In the past, this involved a relatively simple conversation with your physician. In recent years and the wide adoption (sometimes mandatory) of electronic medical records (EMRs), the term “medical transparency” has been increasingly used with regard to patient information. The underlying concept is that having access to medical records makes patients informed medical consumers – so-called “activated” and engaged and thus a valuable partner and self-advocate in the relationship with their physician.
Such information and its use may not always be welcomed by your physician, even as they recognize your right of access. We outline here some of the background on the evolution of Medical Transparency and its present state, and how best to utilize this to foster your partnership with your medical professionals.*

A Word About The Past

In the past, free access to patients’ medical records was not “free.” Patients often had to go through the physician’s office manager or a hospital’s medical record’s room and sign a release form to acquire them, or to have them sent to another doctor. This could be for a 2nd opinion or to specialist, or for themselves. In some cases, there was a charge, including a cost for each page copied.

What Changed?

The limits of patients’ access began to change in 2010 when several medical systems including Beth Israel Deaconess Medical Center, Geisinger Health System, and Harborview Medical Center became involved in an experimental pilot project that gave patients the ability to read their doctor’s notes. The underlying assumption was that patients and their caregivers with access to their clinical notes fosters a better understanding of their clinical situation. As a result of this access, patients become more engaged in their care, are more likely to follow their doctor’s treatment plan including taking their medications as prescribed – called “adherence.”
As of April of 2021, all medical practices are required to provide their patients free access to their medical records.

What did the data show from this pilot program?

There were 19,000 patients being treated by 105 physicians. Of these 19,000 patients, >80% wanted access to their medical records. After a year into the pilot, 90% wanted to continue to have this new access. Importantly, 85% of those with access said that physicians using Open Notes would influence decisions regarding the selection of physicians in the future.

Positive Findings at the Conclusion of the Pilot Study

Better:
•Trust in their doctor
•Felling of being in control (we know that having an illness makes us feel out of control)
•Understanding of their medical condition
•Coordination of care
•Ability to discuss their condition with family members, caregivers, and friends
•Able to recall what occurred during their medical visit, including the what was included in the treatment plan

Open Notes – A Game Changer: Patients Who Read Their Medical Records Had A Better Overall Experience

More institutions like Cleveland Clinic, Mayo Clinic, Johns Hopkins, and many others including those that use electronic medical records – like Epic (MyChart) and Cerner (HealthLife) for example – adopted Open Notes. Many physicians reported that patients who read their medical records have an overall better experience and better clinical outcomes. That’s because they follow their physician’s treatment plan.
Another important feature of Open Notes is that when a critical diagnosis – like cancer – is mentioned during a medical appointment, many patients go “blank” and don’t hear anything after that diagnosis is mentioned. Having an after-visit summary (AVS in Epic terminology and a requirement under Medicare rules) as well as access to the entire encounter allows patients and/or their caregivers the opportunity to review hear all that was said during that visit.

A Word About Medical Transparency

All of the above describes transparency in healthcare. These are the advantages of 1 edge of the sword. Let’s now discuss the other edge of the sword – those issues that physicians face daily and create dilemmas, some of which are ethical in nature.
With Open Notes, patients now have the ability to “amend” their medical record, mainly, what’s called the Problem List. In other words, deleting or adding a diagnosis from this list. How can a diagnosis be added? With the number of apps and wearable devices, the availability of home tests (think home COVID tests during the pandemic) to which patients have at their disposal – like smart watches that can detect atrial fibrillation and produce a reasonably accurate EKG, it’s not difficult to see how a diagnosis can be suggested by patients to their treating physicians.
In the past, modifying the Problem List was possible but required certain steps – thus a barrier. Requests through electronic medical records and other physician portals now occur more often and are more easily made. Some changes may be the result of patients’ concerns about including mental health conditions, heart disease, chronic obstructive pulmonary disease, or sexually transmitted diseases since these may affect insurance coverage or are personally objectionable.

A Key Question: Do Patients Always Want To See These Results in their EMR and Before They See Their Treating Physician?

It’s true that there can be incorrect data in the EMR – like the absence of a medication that’s now taken, or an incorrect medication or incorrect dosage that is shown as being taken, or a resolved problem that is noted as “active.” These are reasonable changes to request and important. On the flip side, what about patient choice and preference? Do patients always want to see all this information? Do they have the medical literacy level to understand what the various tests mean? Reading a radiologist’s report on an MRI or CT without input from the ordering physician is challenging even for non-radiologists. Further, Any abnormalities identified can be a major source of stress for patients who have little or no knowledge about the meaning or the related context of these findings.

A Personal Example

Here’s a great example in my own household. My wife who has a higher medical literacy level than many, had an abnormal kidney function test. As a result, the diagnosis of a Stage 3 kidney disease was automatically added to her problem list, creating quite a lot of anxiety for her. As a physician and her husband, I reviewed the data, questioned what time of day and the circumstances surrounding when the blood test was taken, and assured her that she was probably dehydrated. A good lesson here is when there is an abnormal test, it’s best to question whether it’s laboratory error, or related to a particular activity of event. What needs to happen next is a call to the ordering physician and a request to repeat the study. This step will either confirm or deny the accuracy of the test in question. Another example might be taking a blood test for a blood sugar level (blood gluose) after eating or drinking when you are supposed to be fasting. That result is likely to be abnormally high resulting in a diagnosis of diabetes.
In the case of my wife, the test was repeated and was normal. Do most people have a physician at their side to immediately weigh in on what abnormal tests mean and what to do next? Should patients be able have a choice of seeing their medical tests including diagnostic imaging (like MRI’s, CT’s) without having their treating physicians present to explain? Should a patient be able to remove a factual diagnosis? These are complicated and unanswered questions to date.

Who Controls the Medical Record Now? 3 “Truths:”

Even more complex is who controls the medical record and specifically the Problem List. In the past, these both were the physicians purview. Now, in the name of transparency, physicians must share control with patients. From the physician’s perspective, accuracy is paramount so that physicians know your background which is essential for creating a treatment plan and to have the best clinical outcome. Being challenged about what belongs in the EMR including diagnoses and problem lists disturbs the partnership necessary for quality care and creates unnecessary tension, both of which impact the clinical outcome.
We are left with several truths that require further thought and resolution. First, the “biomedical” or scientific truth; 2nd, the clinical truth, and lastly, the patient’s truth. There needs to be a balance between these 3 truths. Problem Lists need to be accurate in order to provide quality care and have the best clinical outcomes for patients. There is also a need to protect privacy, include input from other physicians involved in the patient’s care for accuracy while preserving a doctor’s ability to be efficient and for patients to remain safe.

Summary

Awareness of both edges of the medical transparency sword are foundational as you navigate your health journey. While it’s important to become your best self-advocate, it’s equally important to create and maintain an open and honest partnership with your healthcare professional. This will guarantee the best clinical outcome. Using medical transparency as a guide, your Problem List needs to be as accurate as possible so that those who are providing your care have all the necessary information to do so. Be thoughtful about adding or removing 1 or more diagnoses from this list. Also, make sure all the data – lab test results, medications, doses, and other historical items are correct. Attention to detail and full understanding of your medical condition makes you an optimal partner with your healthcare professional which most often leads to the best clinical outcome. 

*GNA members can self-publish blogs through our platform. We encourage every member to use this free tool. It's important to remember that the opinions, positions, and statements are those of the individual blogger and not necessarily shared by GNA. 

Resources:

Problems with the problem list. Porter, AS, O’Callahan, JO, Englund, KA, Lorenz, RR, Kodash, E.
Journal of Medical Information 2020 June; 27(6):981-984
New Yorker Magazine, April 29, 2023
Johns Hopkins Medicine – www.hopkinsmedicine.org/office-of-johns-hopkins-physicians/best-practice-news/open-notes-bonus-or-burden
Patients and their medical records: It is time to embrace transparency, Patrick, K. Canadian Medical Association Journal 2014 August 5; 186(11):811