The promise and peril of OpenNotes

After I read this blog on OpenNotes, I struck up a discussion with a radiologist friend. We commiserate over laws and loopholes in laws that cause system abuse. I am so happy that Obama recommended to close the loophole in the Stark Law in his 2015 budget. That loophole has created some rampant abuse.

I worry about and applaud the possible effects of patients being able to read their notes online. We doctors need our own forum to make notes without worrying about hurting our patient’s feelings. But patients also need to be able to review the discussion in the doctor’s office in their own space, with all of their mental focus. OpenNotes seems like a step in the right direction, but not entirely. We need two spaces. One for the patient, and one for the doctor.

When I was in CT, waiting on a specimen from the lung to review, I was telling the radiologist about OpenNotes. He told me that there is a push to the radiologists for the patient to be able to see their diagnosis online, as soon as it is available, before they have even discussed it with the clinician.

Red flag.

I wrote a post here before, called “Poker Face.” In a nutshell, it was about me accidentally conveying during fellowship a patient’s negative diagnosis by delaying my answer too long when being probed directly by the patient. It was an excruciating experience that taught me to use expert words to delay the fact that I knew someone’s cancer had returned or was diagnosed or had metastasized. After all, I am just a pathologist. I have no treatment options or good perspective on prognosis and treatment.

The radiologist worried, as I do, that all the great tools and information that our oncologists and clinicians have to offer a patient will not be there, in the privacy of their own home, while they are reading the ominous information. He worried aloud that the information might overwhelm them. As he was saying that he mimed a gun to his head. I completely agree.

There is way too much misinformation out there on the Internet and you need an educated professional to reassure and guide you through it. I depend on my mechanic to fix my car. I depend on my accountant to do my taxes. As doctors, our patients need to depend on us to pick them up when all seems lost.

The New York Times recently released a big article allowing patients to look up how much their doctors received from Medicare over the last year. It’s telling information, but muddy. We doctors enjoyed Googling each other to find out who is getting what. Pathologists are at the bottom of the list. If you consider Medicare reimbursement is about 30% of overall practice (in conjunction with private insurance), the information is not enough. It’s a step in the right direction, but like many steps mentioned above, it falls short.

I see the need for change in health care. But the problems are multifactorial, and it will take lots of time and energy to fix them. In the meantime, let’s try to keep a proper perspective to protect our patients. Let’s delve back into the reasons we went into medicine in the first place. To help people, to protect and serve. Don’t give them information in the privacy of their own homes that they aren’t equipped to deal with, or anything that might hurt their feelings. That’s a nasty can of worms that doesn’t need to be opened.

Gizabeth Shyder is a pathologist who blogs at Mothers in Medicine

Comments are moderated before they are published. Please read the comment policy.

  • FriendlyJD

    I think it’s perfectly acceptable to delay the availability of reports with information meant to be delivered by doctors – radiology, pathology, lab – until a reasonable time period has passed. That said, after a reasonable delay, I think this information has to be given to patients. Doctors get busy, calls are missed, specialist sometimes have tunnel vision, important information never gets relayed to the patient. I know I’ve had to call a doctor asking if I should be concerned my that my potassium was a 1.9 after the lab company emailed me the results four days after they had been delivered to the doctor.

    As another example, the place I had an MRI makes the radiology reports available one week after they’ve been delivered to your doctor. My nephrologist told me nothing was wrong, but I picked up the report anyway for my personal records. Turns out, although my kindeys were good, I had a bilateral hydrosalpinx. Although not relevant to my kidney disease, as a 28 year old woman, it was very relevant to my fertility. It would have been a shame if, when I had decided to become pregnant in my early 30′s I had wasted years trying to discover something a radiologist had found a few years back. As it was, when the time came that I wanted kids, I already had the tubes removed and had already saved for IVF.

  • Peter Elias

    When I read a blog post highlighting the alleged risks of OpenNotes or hear a colleague express angst, I think of Colonel Jessep in A Few Good Men. It’s as if they are telling their patients: “You can’t handle The Truth.”

    The objection to honest and transparent sharing of the clinical information and thought processes underlying clinical decision making assumes that power asymmetry in the relationship between patients and their clinicians is a good thing and must be preserved. In primary care, this is simply not true.

    Certainly I know more about medicine in general than most of my patients. I should: I spent years in training, work hard at staying current, and have done it full time for decades. I also usually (not always) know more about the specific illness, symptoms or treatment at hand than most of my patients. But that is only half the story. It is equally true that they know far more about themselves, and about how their illness and our treatment impact them, than I know.

    If a clinician believes it is not merely acceptable – but even necessary – that he hide some of his medical information or concerns from patients for their own good, and without their permission or knowledge, then the reverse is equally true. Patients are not just entitled but actually obligated to hide information about themselves and their health or life from him. I have yet to hear a clinician say this would be wise.

    The analogy that we depend on our accountant to do our taxes is off target. We don’t have all our financial information delivered to our accountant and then only know what she tells us.

    The concern that patients will see results before we can talk about them is legitimate but overblown. For one thing, it does not apply to office notes: the patient was present and participated in the interaction. If I order a chest film on a patient with a chronic cough, I should be telling that patient there is a possibility of a serious finding. (The patient most likely understands that already, and may in fact have asked for the film because they are afraid they have cancer.) As both a person who has waited for a biopsy result and the spouse of a patient who has had biopsy results showing cancer, I don’t personally believe that waiting a week to be told in the office is any less painful or frightening than seeing the result and then making an appointment in the same time frame to address it (I have experienced both.)

    During my 37 years as an actively practicing family physician, I have evolved steadily towards increased transparency. For the last two years I have been doing my office notes ‘out loud’ and in real time with my patients, giving them a copy when they leave. Unlike the many clinicians I hear expressing reservations without having tried this approach, I can speak directly to the actual impact this approach has.

    1. It is more work. I spend 60-90 minutes every work day reviewing and preparing the charts of that day’s patients. (Payback: I am much better prepared for the visit, I can focus on the patient rather than the EHR during the visit, and I am totally done charting when my last patient walks out the door.)

    2. It makes not just the note but the interaction itself much more collaborative. This is because the note is no longer my private diary of my perspective of the visit, but is our shared record of our process and our plan.

    3. I have become much more honest and consistent about dealing with difficult topics. I cannot hide behind secret thought or jargon, but must address failed plans, problematic patient (or clinician) behavior, and possible poor outcomes in a way that we can both understand and use. One of the biggest (and happiest) surprises for me has been how powerful this is and how much it improves my ability to work with patients.

    4. It is a powerful tool to prevent (inadvertent) dishonesty. (It will always be possible to be dishonest intentionally.) I am 100% certain I am not documenting things I didn’t do or instructions/explanations I didn’t provide.

    5. Patients find and politely correct errors. Most of them seem small to me (though not necessarily to the patient) but some have been of major importance: corrected allergy lists, important added or corrected diagnoses, robust family history when the patient returns with notes made on the record of the previous visit. Occasionally a patient uses the note as a starting point for research and brings back valuable information – a process I have learned to encourage.

    6. Patients bring the note home to discuss with family (very useful with a concerned spouse, or with the other parent of a child), or to visits with other clinicians on their team to help with care.

    7. The assessment and plan are written in a way that allows the patient to use it as a working document to manage their care and as a reference between visits, and then we can use it as a starting point for the next visit.

    I can also speak to some of the things that have NOT happened:

    1. Only rarely have patients called upset, concerned, or confused because they didn’t understand the content in the note. They do call to ask questions or get more information – but this has been constructive and appropriate and has often led to significant improvements in process and outcome.

    2. Patients have not asked that I change the note.

    3. I have not had to leave information out of notes for fear the patient would read it. (Though I am careful to avoid being judgmental, and when I use medical terminology I explain it as I am typing/narrating.)

    4. It has not been an issue with psychiatric or social issues. In fact, the need to frame these issues in a way that is accurate and descriptive, understandable, and not judgmental has made raising, discussing and working on these issues easier and more effective. (For example, this leads to consistent, frank and productive discussions of issues of use/diversion/misuse or secondary gain with chronic narcotics.)

    I am convinced that (with competent patients) any information that affects their health or the decisions related to their medical care needs to be in the medical record and freely available to the patient.

    My bottom line for clinicians who express reservations about transparency in the medical record is simple. Try it. You’ll like it.

  • maggiebea

    Thank you, Peter Elias, for saying from the physician side of the desk what I wanted to say from the patient’s side. Whose body is this, anyway? After living in it for 67 years I’m not comfortable having a wonderful clinician a quarter-century younger struggling to decide how to tell me something the pathology report makes perfectly clear.

  • Eric W Thompson

    I think that patients having access to the notes in their records is good. But I do believe it to be of great value to have the provider present the information to the patient. I am an advocate at the VA and patients have come in blowing up about a test that they didn’t understand. And sad or mad when there was nothing to be sad about. That said, a delay in having the note available should give the provider enough time to notify the patient of results.

  • Peggy Zuckerman

    As to the comment that patients will not have access to “all the great tools and information that our oncologists and clinicians have to offer”, should the patient receive the information on the CT or in the pathology report prior to the upcoming appointment, I offer the following. The patients are in need of as much data as possible very quickly in the diagnosis, in order to start the very difficult process of educating themselves, gaining enough vocabulary, and a support person to help them understand what is really being said by the doctor. They may need to learn how to pose the necessary questions to the oncologist, to determine if that clinician has read the report thoroughly, and if that provider is indeed able to communicate well with them.

    As a patient who has corresponded with hundreds of other patients, I am painfully aware of the number of errors, miscommunications, and lack of skills by the providers. Many times, the clinician who receives and is to interpret the report has already misdiagnosed the patient, and is ill-equipped to give the necessary advice. Certainly that patient is best advised to be educated as early as possible about all their options.

    Radiologists could also direct patients to credible, patient-accessible information, as the writer hopes will come from the clinician. If that data is truly objective and based on science, that may prevent more errors while empowering the patient at his most vulnerable time.

  • Steve Downs

    There’s not much I can add to the excellent comments on this post, but I do want to bring in some of the research results. The concerns that you raise, Dr. Shyder, are completely understandable and are precisely why we (at Robert Wood Johnson Foundation) felt it important to support a large-scale trial of open notes in practice. I’d encourage you to go to myopennotes.org and go through the publications associated with the study, but I can also highlight a couple of the key findings. First, in a pre-intervention survey, patients and doctors had dramatically different perceptions on the questions of whether the information would cause patients to worry more or whether patients would find the information more confusing than helpful. To each of those questions, the majority of doctors answered “yes” while fewer than one in six patients agreed. Second, the post-intervention survey revealed that even the patients had overestimated these concerns.

    These results in no way diminish the need for sensitivity to how patients might respond to notes. While widespread anxiety might not result from opening notes, there are circumstances where careful, proactive communication will be needed. As more organizations adopt the practice, it continues to be important to share experiences and lessons, as Dr. Elias has done here.

  • Judgeforyourself37

    As someone who is a retired RN, and someone who has been a patient on numerous occasions, I can say that transparency is the essence of a good working doctor/clinician/patient relationship. When I first entered the profession, in the 1950s, doctors often would not tell a patient the truth “for the patient’s own good.” This was due to the fact that the physician felt that “there was always hope,” Later many of them or their younger colleagues found that sometimes there is “no hope.” Patients and their families or those closest to them must be prepared for the inevitable.
    Perhaps, too, if the results of the various tests were given to the patients in a timely manner there would be less hostility. If the physician did not “forget” or “neglect” to call the patient or family (in the case of a child) as soon as possible some of the angst would be obviated.