Why OpenNotes and access to the medical chart is important

Have you ever read what your physicians and nurses have written in your medical chart? If not, would you want to?

The OpenNotes project is a recently launched observational research study that involves 100 primary care doctors and about 25,000 patients. Lead author Dr. Tom Delbacoa, a primary care physician at the Beth Israel Deaconess Medical Center, poses the research question succinctly: “After a year, will the patients and doctors still want to continue sharing notes?”

In the study, patients are connected to their doctors via email and invited to view their doctors’ notes after each visit and again before the subsequent visit.

These patients are registered portal users and already take advantage of Internet access to their lab test results that their physicians make available online. What is new is this: For the first time, these patients will have access to their chart notes online. They will be able to read what their physicians have recorded, such as their physicians’

  • findings on physical examination
  • interpretation of such findings
  • conclusions about a patient’s current condition
  • thoughts about future evaluation of the patient’s condition
  • prognosis for the patient

Why do we need it?

If you are wondering why we need the study, here is a two-word answer: informational technology.

The advent of informational technology (IT) has changed the face of 21st Century medicine in dramatic ways. Electronic medical records are changing how clinicians record, retrieve and exchange medical information about patients. And online resource centers and support services are changing how patients learn about their disease(s) and treatment(s).

On the legal front, the 1996 passage of the federal Health Insurance Portability and Accountability Act (HIPAA) assured patients the right (1) to review their medical records and (2) request corrections and additions be made to the record. Since then, the medical chart has no longer been the sole purview of clinicians. Yet relatively few patients take advantage of their right, either because they don’t want to or because they are blocked by obstacles when they do want to.

Great controversy persists on both sides of the stethoscope regarding the consequences — positive and negative — for patients.

IT is not going away. We need to understand the potential benefits and risks of open notes. The observational study described in my last post is a start.

Perceived problems with OpenNotes
My first reaction to hearing that patients could see and amend their charts was, “Oh, no!”

My reaction is not unique among primary care physicians (PCPs). For those of us who do not welcome this development, what are we worried about?

Remembering how time-crunched I was when I was in practice, and seeing how much busier today’s clinicians are, my concerns that are shared with some other PCPs include:

  • Patients may call, email or write letters, wanting clarification.
  • Patients may call, email or write letters, wanting to discuss or correct what clinicians consider insignificant details.
  • Patients may misunderstand what is written and then draw inaccurate conclusions about their condition, which could lead to fear, guilt, anger, depression, confusion, frustration or hopelessness.
  • Patients may misunderstand a term or abbreviation and feel angry at a perceived insult.
  • Patients may learn upsetting news on their own, without the benefit of their physician or nurse to offer a healing context to help patients absorb and process the news.
  • Clinicians may refrain from recording useful information for fear of misinterpretation by  patients.

The purpose of the medical chart

When I was in practice, I used to tease my colleagues, “I want my patients’ charts to be so well-organized and thorough that if were struck down by lightning, you could easily take over their care, knowing exactly what I was thinking and planning.”

In my mind, the chief purposes of my medical charts — and it’s no accident I’ve always referred to them as “my” charts — were (2) to help me provide efficient and high quality care by summarizing and organizing the data and (2) to help others take over should I be unavailable.

In addition to recording the medical history and the findings of my physical examination of the patient, I recorded my differential diagnosis (the list of diagnoses I was considering), my impressions of the most likely diagnosis, my plans for evaluation and my prescriptions and instructions for the patient. Sometimes I even recorded my “Plan B,” in case the current treatment was ineffective.

The intense grief I felt over closing my medical practice permanently when my cancer recurred the first time in 1992 was softened just a bit when colleagues told me how easy my charts made it for them to take over the care of my patients.

The medical chart has other purposes, such as providing:

  • legal documentation of what was — and wasn’t — done or said at a patient visit
  • documentation for insurers’ determination of payment (or non-payment)
  • quality monitors

Healthy Survivors want their medical charts to help them get good care and/or live as fully as possible.

The potential benefits of OpenNotes

For years, consumer advocates and some leaders in healthcare policy wanted to change how clinicians and the public viewed the medical chart. “[T]he Institutes of Medicine urged society to view the note not as an artifact, but as a living interactive document shared between patients and providers.”

Why did they work so hard for this change?

Because the potential benefits are huge.

Despite my initial negative reaction  to the idea of patients being able to read their own chart, I can see the potential benefits. By enabling patients to read and amend their chart, we open opportunities to:

  • pick up serious inaccuracies and avoid medical errors
  • facilitate sharing of notes with other consultants
  • reinforce the clinician’s findings and recommendations discussed at a visit
  • clarify something the clinician said or did at the visit
  • improve patients’ insight into clinicians’ decision-making
  • gradually accept and adjust to some diagnoses
  • motivate patient to comply with prescribed behavioral modifications
  • help patient prepare for office visits
  • dispel unfounded worries about what clinicians were finding or thinking
  • involve family and other caregivers in the patient’s care

Advocates believe that when open notes become the standard of care, clinicians and patients will enjoy improved efficiency, communication and satisfaction.

[Editor's note: Stay tuned for part 2 of Dr. Harpham's take on OpenNotes, coming soon]

Wendy S. Harpham is an internal medicine physician who blogs at Dr. Wendy Harpham on Health Survivorship and is the author of Only 10 Seconds to Care: Help and Hope for Busy Clinicians.

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  • Erica

    Great entry. In the end, I think this can be extremely beneficial for all parties involved. I ALWAYS get copies of all of my tests and keep them in a neatly organized binder. And if there is more than one physician required to deal with a circumstance, I am able to provide them with a copy of the test results in advance so that they are informed prior to my visit. This saves both of us time during the appointment and helps the doctor to prepare a potential course of action in advance. And legally I think HIPAA might be saying the chart belongs to both parties.

  • Med student

    Having seen a comment on another article on this site that was very offended by the use of the phrase “autistic child” instead of “Child with autism”, I see this problem with perceived insult as being a tremendous hurdle to overcome for both parties. But with our culture being what it is, most likely doctors will have to be even more conscious of their documentation, which takes time and thought away from the patient’s problem. It’s not insurmountable, but man it can make things difficult. Like being facebook friends with your in-laws.

  • http://www.wendyharpham.com Wendy S. Harpham, M.D.

    Dear Erica,

    You are correct: The 1996 passage of HIPAA gave patients the right to read and recommend corrections to their charts. Even so, relatively few patients today read their own charts. Some patients have no interest in reading their charts. Unfortunately, many patients who want to review their own charts still face obstacles, such as having to wait a long time, fill out release forms, and/or pay per page of copied notes.

    I completely agree with you about the many potential advantages of open notes for both patients and physicians. But it is not a risk-free endeavor. Physicians’ notes can create problems, for example, if patients are unfamiliar with medical terminology and/or don’t want to learn certain things about their condition.

    From the physicians’ perspective, when the chart was read only by physicians and their professional colleagues, the goal was to record information and conclusions in ways that were most useful for clinicians in their care of patients. They didn’t have to worry if their notes were written in ways that might be harmful for patients reading their own charts.

    With open notes, clinicians now face the challenge of recording medical information in the chart in ways that are maximally useful in their care of their patients and — at the same time — healing for patients who read their own charts.

    As I wind down my series of posts on OpenNotes, I’ll explore this challenge from my vantage as a physician/patient.

    With hope, Wendy

  • Erica

    Hi Wendy-

    Thanks for taking the time to write back. So few guest bloggers actually do. The writing of the US constitution comes to mind. It was developed during a time of great expansion in America. But it was also written by renegades. They were not like their Christian brethren, totally the opposite. They had radical ideas that they knew were meant to be amended, and added to for the times down the road. The spirit is worth exploring all of these years later, but adaptation was always their thought process and goal.

    Where I’m going with this, lest you think I’m a complete wing-nut, is that “patient charts” as they were meant to be used 100 years ago, doesn’t necessarily work now. And to that end, people are a lot savvier about their healthcare needs. As time and technology expands, so too does the need for healthcare to get on board that train.

    I currently live in Europe although I’m moving back to the US in a few months. And we run into the same things here, although they do it based on a reasonable assumption of privacy, you don’t have to sign loads of forms. But having gone for a MRI last year I asked for a copy on CD. They said oh it will take a while we can send it to you and it will cost 20 CHF (almost $20 USD). They thought it would deter me. I knew that if I left the building without it, I’d likely never see it. It took 10 mins I paid my money and was on my way.

    All of this said, people will continue they way they want information whether it’s automated or not. People will continue to be an active participant in their healthcare decisions or not. What I would hope doctors might do is find different adjectives. But everyone has to evolve really whether they like it or not. Heck my 94-year old gram (who didn’t attend college) is online and she gets her doctors to explain things in a way she will understand them. If she can do it, so can we.

  • http://www.docjosh.com Josh Schwartzberg D.O.

    I have been giving each patient in my busy FP a copy of their note directly printed from my EMR before he/she leaves the office and I specifically ask them to review the information and report back to me any discrepancies or erroneous information, and share at their discretion the information with any other health care personnel they see. After over 1 year I find absolutely no significant increased burden involved and my patients are appreciative, as are other medical professionals they come in contact with. It is high time we physicians let the sun shine on our work’s documentation; this has improved the physician-patient relationship and also quality plus coordination of care. It’s a no-brainer! Those of us who do good work should be proud to show it.

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