Medical Notes for All to See

Why would we willingly engage in this "high-tech, high-touch" experiment of opening up the medical record, taking such a dramatic departure from the paternalism of medical care that dominated our practice just a couple of decades ago?
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During a doctor's appointment, a patient admits that he often forgets to take his medication. Or, he describes feeling short of breath, which could be caused by anything from anxiety to having had a heart attack.

In each case, this is information that the doctor should write in the patient's chart. It's information that's crucial to his care. Yet, in the past, these doctor's notes were considered sacrosanct; they were for the eyes of providers, not patients.

Cleveland Clinic patients can now see the notes we write about them after an office visit. Later this year, they will also be able to view selected hospital notes. This comes on top of the laboratory results, radiology and pathology reports, and problem and medication lists they can already access via a secure online medical record from the comfort of their living room couch or on the go with their smartphone or tablet. And they don't need our permission to do so.

Why would we willingly engage in this "high-tech, high-touch" experiment of opening up the medical record, taking such a dramatic departure from the paternalism of medical care that dominated our practice just a couple of decades ago?

Because increasing transparency will result in better medical care.

On an elemental level, all of this information is about the patient herself; she owns it and she is entitled to it. Empowered consumerism has also pushed other industries to become more open. Imagine a banking system where we would need to go in person to our local branch and sign a release form to view our account balances or withdraw money. Yet we have accepted such a system in health care as being the norm.

Medicine has been transforming from a hierarchical structure in which doctors tell their patients the treatment plan without discussion, into one of shared decision-making, in which doctors and patients are equal partners. To have a level playing field, patients need unfettered access to their personal health information.

Transparency has been on the rise for some time. Hospitals are releasing statistics about patient outcomes in orthopedics, cardiac surgery, breast and prostate cancer, organ transplants and even for the patient's experience. This allows patients to become informed consumers and to comparison shop for the best medical care to treat a particular condition. We have become increasingly comfortable publicly displaying these results because it raises our game, makes us better providers, and allows external groups to assess the value of our medical care. We expect similar improvements in quality as we release information to individuals. Ultimately, this makes us personally more accountable to our patients.

What concerns have been raised about our new policy? A good place to start are the comments logged by some of our own care givers in response to the announcement of the impending availability of office and hospital notes:

"Since we are required to have anything we hand to patients be at an elementary school reading level, are we now to change our documentation to reflect the same?"

No, but as patients and providers get used to this new openness, patients will become more savvy in the jargon and abbreviations we use, and doctors will alter how we write assessment and plans so that patients, as well as providers, can use them as reminders of what was discussed in the office. This will lead to better medication adherence, improved understanding of testing and treatment plans, and to more accurate notes. Importantly, we provide links to trusted sources of basic health information so patients can also confidently do their own research on the meaning and implications of their medical problems.

"Having to discuss differential diagnoses by telephone or by email after spending large amounts of office time is not a very happy thought."

If a patient reads the office note or sees a test result from a recent encounter and is confused about the possible diagnoses that are being evaluated, we should want to know this. A telephone call or email is an opportunity to clarify, educate and motivate. Remember: The patient was already confused; we just didn't know it before.

"It is very concerning that patients will be seeing all of the office visit notes. Patients will be upset if we write comments doubting a patient's compliance with treatment. Such documentation is medically necessary. The relationship between the physicians and their patients could be significantly affected."

For patients on long-term medications for conditions ranging from chronic leukemia to human immunodeficiency virus, the leading cause of treatment failure is patient non-compliance -- forgetting to take pills every day, sometimes multiple times a day. This has nothing to do with blaming a patient -- it is incredibly difficult to structure your lifestyle around time-dependent medications. It is our job as doctors to recognize all factors that interfere with successful care of our patients, and to have a thoughtful discussion about ways to improve adherence. Having insight into our patients' struggles should actually enhance our relationship with them.

We also recognize that in rare circumstances (in certain psychiatric or social situations, such as abuse), release of medical records may be counterproductive, or even damaging. Mechanisms exist to withhold information on a case-by-case basis.

All of this boils down to transparency, communication, and partnership -- our goals in meaningful doctor-patient relationships. Breaking down decades-old barriers is always scary at first. Improved patient satisfaction and health outcomes will be worth leaving the security of our medical note cocoons.

Dr. Sekeres is Professor of Medicine and Director of the Leukemia Program at Cleveland Clinic. He is a frequent contributor to the New York Times Health and Wellness Well Blog.

Dr. Levin is the Chief Medical Information Officer at Cleveland Clinic. He is a co-author of the book: mHealth: Global Opportunities and Challenges (Convurgent Publishing).

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