Should Patients Read Doctor’s Notes? Wrong Question.

When you have a doctor’s appointment, and she makes some notes and later formalizes them for your medical record, would you like read them?  There’s been debate over the years about whether patients should read the notes that doctors write about them and their health issues — in academic circles, in a great Seinfeld episode where Elaine’s dermatologist won’t let her see what he wrote about her, and more recently in a New York Times piece that discusses the promising OpenNotes project.  I think this is the wrong question.  Instead, you should walk into your doctor’s office with a video camera or tape recorder.  More on that in a moment.

The discussion about doctor’s notes might seem silly, since for many years we’ve had the right to go the medical records department and get copies of our records.  So all we’re talking about here is making that more convenient, for example, by letting you log into your online account and see the notes there.  However, this is much more than convenience, it is a cultural statement: we, the doctors, should sincerely invite you to read our impressions, our thought processes, our decisions; and learn from them, even question them.  While this is a powerful statement, we’ve gotten distracted by this artifact, the doctor’s note.

Instead we should focus on the communication it represents.  The goal is not to sneak into the doctor’s inner thoughts and see what he’s really thinking about me, rather it is to gain a deeper understanding of my health and add a channel of communication from the doctor whose precious minutes just aren’t enough.  (By the way, to those who fear doctors will no longer be able to write what they *really* think, I have two comments.  First, patients can already request copies of their records, so be thoughtful in your notes!  Second, I would consider supporting a separate area for comments that the doctor sincerely feels are in the patient’s best interest not to see and are only for other clinicians, similar to what’s done today for mental health records.)

What we should be focusing on here are the best ways for the patient to understand and remember the doctor’s guidance, including the Q&A that typically happens during the visit.  The doctor’s note hardly addresses this.  It’s designed for the doctor to communicate to other clinicians who will later care for the patient, and in practice it’s increasingly full of not-so-useful information included for billing purposes.  Sometimes the doctor will create a separate note explaining the plan to the patient, especially if his EMR auto-generates a template for this.  But this is uncommon, and it provides only a brief summary of the outcome of the discussion.

I encourage loved ones to take a tape recorder or video camera to their doctor’s appointments, especially ones where new or critical issues will be discussed like whether or not to have surgery or how aggressive to be in treating a cancer.  Most of us have experienced how little one actually remembers when fear or stress levels are high.  Being able to review the conversation again later can make a huge difference in understanding and better decision making.

As a doctor, does it make me nervous when someone wants to record our conversation?  Yes.  Because it holds me even more accountable to communicating clearly and taking good care of my patients.

(This post was cross-posted on Huffington Post.)

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31 Responses to “Should Patients Read Doctor’s Notes? Wrong Question.”

  1. […] Article Roni Zeiger, e-patients.net/Huffington Post, 17 August 2010 SHARETHIS.addEntry({ title: "Should Patients Read Doctor’s Notes? Wrong Question.", url: "http://articles.icmcc.org/2010/08/18/should-patients-read-doctor%e2%80%99s-notes-wrong-question/" }); […]

  2. Great Post, Roni! We need access to the notes and audio recording to those very important meetings.

    For most of my son’s recent IEP meetings I would bring a recorder with me in order to leave with a clear understanding of the minutes of the meeting and the thoughts behind the written recommendations within his IEP.

    I vividly remember the first meeting I pulled out my recorder at our public placement and let the team know I would be taping them. The room quickly divided. Some individual teachers/admin. who had been verbose in the past stopped talking. The clinicians from Speech Language, OT, Audiology, and Psychology spoke as much as they had before using supporting documentation.

    I was amazed at the change in behavior. I found that the awareness that everything was being recorded made people attempt to be very clear in their points and and spoke with authority. After the meetings, I would go back over what was said and could amend the meeting’s minutes accordingly.

    In my son’s current educational placement everyone speaks openly and with authority, whether or not there is a recorder on the table. Transparency wins the day!

    I would love to see this level communication available in the medical world.

    Thanks, Regina

    I would love to see

    • Roni Zeiger says:

      Thanks for sharing this story, Regina. I started learning about this issue when I noticed my own different (better) behavior as a doctor when a loved one was in the room. Your point about transparency is spot on. Bringing a tape recorder or daughter or brother is a way of communicating: this is important and I want to make sure I’m getting it all!

    • Jane says:

      Yes. A tape recorder in the room benefits both practitioner and patient. When they are prohibited, one must wonder if another practitioner should be sought.

  3. Very nice post. Thank You Roni!

    Things will get much clearer as soon as informed and engaged patients are the norm.

    Contemporary patients can understand a lot, and fully share with the health professionals the choices and responsibility of their care. Of course they should have access to all the information that helps professionals make their recommendations. That reminds me of the fight 14 years ago about open access to the PDQ statements for health professionals. That was the wrong discussion then. It is an absurd one today.

    The troubled patients should not be the one that will limit the info available to the responsible ones. The millions of networked and engaged patients deserve to be treated with respect and as full equals. Nothing less should be tolerated.

    Recorders also come in many shapes and forms. The ACOR groups always mention to new members that they should no go alone to meetings where diagnosis and treatments decisions are going to be presented. Caregivers and loved ones are the human form of the recorder you mentioned.

    • Roni Zeiger says:

      Yes, the human form of the tape recorder! A related point I think doctors should consider: I try to remember at the end of an appointment to ask, what other questions do you have? When a caregiver is present, she should be offered that question as well, since she often has primary responsibility for synthesizing all the information discussed. Of course, the patient and caregiver also don’t have to wait to be asked, but it’s a nice signal from a clinician that his or her ears really are open.

  4. should doctors read patients’ notes?

    • di says:

      until recently I thought doctors did read my notes, yesterday I had an appointment with a new doctor, and they asked me to go & get my records sent to them, SO I called them the day before to see if they received them & no records yet (the request was made 5 days earlier.) So I took mine but the whole time, I thought darn, I want her to be prepared about my case, I’m not having luck getting the right diagnosis, I’m using a specialist. The receptionist said, just bring yours it’s not like she studies them the day before. So now my so called “specialist” has what? 2 minutes to review my difficult case? & see all the testing in 4 years & my MrI’s.

      Do I now wonder if anyone is taking me seriously, or will Is the only solution being considered it overmedicate me for the pain so no one has to look for the reason, I’m like this.

      So I got sent to another specialty now, Doctor 14 will not be the end of anything, I’m being sent to doctor 15 & 16.

      I have no clue if I’m just a joke.

      any you wonder why people get depressed??
      Diane

      • Roni Zeiger says:

        Diane, it’s unfortunate but true that doctor’s often do not read previous records prior to a visit. In the U.S., at least, they just don’t have time scheduled for this. And this is in part because we doctors don’t get paid for doing these ‘soft’ tasks. I hope that eventually we learn to pay doctors for the quality of care they provide, including making sure that you review your records and make it clear to you that they have done so.

        • Di says:

          this is off topic but I often wondered, If I could hire a retired doctor to review all my records to give me direction & focus to the next step in getting a diagnosis. Right now I’m like a dog with a bag over my head trying to find the right type of doctor, May be I should pay my doctor cash on the side to gather my records.

          I don’t know if every specialist, that I’ve seen has sent my family doctor notes. I really wish I knew what records they have & even if he’s seen the notes, I guess he’s too busy to try to put everything together to get a next step for me.

          Today I have lots of pain, & I really feel hopeless, with not having a diagnosis & not knowing who to see next. I think this whole system is a joke, but national health care would be alot worse.

          thanks
          Diane

  5. anne says:

    I could not agree more. I am a mom to children with complex health needs and also a nurse working at a children’s hospital. A few years ago we began the work of building a patient family portal and envisioned it as a way to enhance family-provider communication, family education and independence, safety, etc. We are fortunate to have leadership that supports moving in that direction. The portal is up. That represents progress and I am proud of my organization. However, we have “turned off” many features due to clinicians’ concerns about giving patients access to records via the portal. (i.e. labs – the presumption is the family will panic at any abnormal value.) Your point that families can access medical records at any time (when MR is open) is the exact point our lead physicians and I tried to emphasize. It was eye opening for i realized that the illusion of records being for clinician eyes only is widespread. We are piloting some of the features with a clinic that was willing to use them and I think that will help us move forward. But today, “permitting” patients/families to access what they can already legally access remains unthinkable to many.

    But you are so on target…..access is not really the issue. A doctor’s note can be many things. When written without effective and **health literate* doctor-patient communication and collaboration we relegate the note to a piece of paper rather than allowing it to be a “power tool.”

    I wrote a “commentary” for Pediatric Annals April 2010 called “Take The Little Steps: Providing Complex Care” (Vol 39:4; pages 248-253). It basically describes what I believe you are describing. I described how my sons’ primary doctor and I always wrote progress notes and medical summaries **together**. He considered us co-authors – that “his notes” in fact be “our notes.” Our goal was that they reflect what *we* wanted to communicate.

    Writing notes together also provided a forum for him to provide education and guidance which enhanced my comfort and competence in providing ICU level care at home. It also allowed me to assure he understood my concerns and priorities which better assured appropriate utilization of services and resources. We used it as an opportunity to clarify goals and make decisions. Communication amongst all team members improved. There were less phone calls for clarification, fewer mistakes and a better sense of the big picture. Co-authoring notes and summaries served as the perfect forum for the doctor to check that I understood, processed and used the information he provided. This ultimately was the single most important factor in decreasing their annual number of hospital days.

    It seems too simple but in reality it comes down to reciprocal communication. reciprocal communication, not a look at the doctor’s notes, is what I need to care for my children. It is what I emphasize when teaching residents and medical students. And though I typically write and speak to pediatric clinicians, I have learned in the last 6 months that my commentary about pediatric health care is exactly what I need as a chronicallu ill adult patient. My experience has been that adult health care is quite a few steps behind pediatrics when it comes to reciprocal communication.

    The question for me is whether a doctor’s note is going to be a largely useless piece of paper (most medical records are) or a tool that enhances communication, guides discussion and promotes shared decision making. I never really thought about your point that access to doctor’s notes is nothing more than unilateral communication (which I think must be an oxymoron). The majority of doctor’s notes about my sons are ineffective, inefficient, inaccurate and even dangerous methods of communication. They are that way due to precedent, time, insurance mandates and a host of other factors. I suppose at times they were written by someone who really did not care about communication but I believe the majority of clinicians want something very different. Patients and/or their families certainly do.

    In asking us to stop and think about what notes represent (communication) you’ve redirected us from the “wrong question” and pointed us towards the right one. Thank you for that!

    • Roni Zeiger says:

      Anne, I am grateful for this concept of patient and doctor co-authoring notes. It’s so obvious when you say it. It also makes me think that both patient and doctors should sign the note. When doctors dictate notes, for example, they are later asked to sign the transcription to confirm it’s accurate. In your model, both patient and doctor signing could symbolize they understand each other.

      This also reminds me of the recently offered definition of participatory medicine: “a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.” Or more in the theme of your idea: responsible co-pilots.

    • This reminds me of last week’s discussion here about the OpenNotes project, including:

      “In short, the medical record should become a joint working document among my providers (all of them) and me (a collective noun, including my circle of supporters).”

  6. di says:

    I’m currently going through a 4 year health issue that no one is able to diagnose, so I continue to go to different types of doctors to try to get a solution.

    today I asked my primary doctor if I could have the notes from a doctor I seen 4 weeks ago, It was a specialty hospital & I just wanted his opinion in my file before I go to the next doctor.

    He didn’t do any tests so she told me I can have copies of test results, if there were any but He doesnt’ have to give me his doctors notes.

    The problem is even when I see a new doctor they ask to forward records, with all the doctors I’ve seen, I don’t have a clue if any 1 doctor has all the information.

    My Primary care doc still doesn’t have anything from this specialist 4 weeks ago. So how can my doctor be making accurate decisions?? If I wouldn’t be trying to keep all my records I wouldn’t even know this doctor didn’t get them.

    My battle has me believing that it might be all in my head, & doctors seem to be trained to say they believe me, but honestly if they thought I was imagining this pain, I’d see whoever I need to see to get rid of the pain. So I’d really like to know, if there were any other thoughts.

    I’m going to another doctor in 2 weeks & the nurse told me there are routine tests she starts out with, but since I have alot of my records, & I have them oranganize that I know where I have them then we either won’t have to repeat something or we’ll be able to compare something.

    So I like having my records & doctors notes, This last time the notes I got & paid for aren’t worth anything. I can’t read them for one & some are just the notes that I consented for surgery. I actually think they gave me these type of records to get me to stop asking for them, they charged me $30 for 4 pc of worthless paper.

    I’m seriously looking for answers but the nurses ask, are you changing doctors, or they explain we’ll send them, sure but I want them, Even if they send them, does the doctor read them before my appt? many times the doctors ask questions of me that I figure 1. they didn’t read my file, & 2 I’m glad I have my records because I don’t know the names of test & procedures, this way I’m accurate.

    This is just my opinion
    Di

  7. This is a great discussion. But I’m a little worried about the emphasis on the office visit as a “meeting” that has to be memorialized in minutes or even recorded. For really important consultations involving a battery of health professionals, that can be enormously helpful. For most visits, though, that might just add a layer of bureaucracy.

    It may be worth focusing on a result of consultations that’s often lacking: a care plan that clearly lays out a mutually agreed upon, algorithmic course of tests and interventions, which are integrated with self-care (or family care-giving) and observation. Too many patients (as in these comments) are forced to lurch from one clinical approach to another, without an overarching, explicit strategy for diagnosis and treatment, and without a useful and comprehensive statement of their own role in their care.

  8. George says:

    I would like to add that the patient should be as prepared as possible, with notes of their own, when coming into a doctors office.

    Sort of like preparing yourself for a test. Take notes on what your doc tells you take notes on research you do yourself and questions you want to ask the doc.

    Just my 2 cents.

    • di says:

      as a patient, can I add that it’s hard to be prepared. right now I’m filling out a questionaire for my upcoming appt, the questions they ask aren’t exactly my problem, so maybe, again, I’m in the wrong field, but after 4 years of searching for answers, I want the doctor to take the ball & explore & figure it out. Many doctors have an ideal that they want me to fit into & if I have several symptoms that aren’t into the norm, I think they just don’t know what to do.

      Also about the doctors notes, I had one doctor ask me a question & the answer was no, but when I read the note I did get it shows that he had a concern but didn’t tell me because it doesn’t happen that often. I’m glad I had the notes, I can show the other doctor, what he was feeling, almost like one doctor to the next doctor, I’m so glad I didn’t have to rely on me, because I don’t know medical terms . So I would have never understood.

      Also, a draw back to me having my records is I spend alot of time looking things up on-line & getting definitions, I even tried to learn how to read an ekg, when one doctor read my presurgery ekg & told me he thought I had a heart attack, I over heard him discuss it with another doctor in the hallway & he said he didn’t see a problem, — We’re talking my heart here, now I’m told to go home til they can set up a stress test. I’ was afraid to sleep that night, & I did call an attorney & get a will made.

      There are times I’m glad I have the notes but there are times I’m driving myself nuts trying to be my own doctor. I’m getting to believe that each doctor is so specialized they can’t see the whole picture. Because My problem can be in an area that’s obgyn, gastro, urology. I need someone who can cross medical lines & I don’t have it.

      Di

      • Jane says:

        We should not have to “be our own doctor” in the way you illustrate. To hear contradictory statements over something like one’s heart function leaves little choice but to delve into far more medicine than anyone is prepared for, on top of the fear.

  9. Neil Bacon says:

    But does the perceived (real?) power-base make it close to impossible for many patients to do this, especially those who might most need it? Is is of course only after the consultation that patients realise they have forgotten something, whilst many consults that patients think will be innocuous and routine, turn out to the be those when the serious stuff happens. So multiple reasons why getting patients to record their visits might not be the best way of achieving the desired outcome.

    Perhaps we need to be more radical and say that those doctors who aspire to be the best should *always* video themselves (making sure the patient knows of course) and then offer (or get the receptionist to offer) to send the patient the URL, i.e. why should we put the onus on the patient? If we think it is a good thing for patients to have recordings of consultations (presumably because we believe it will lead to better outcomes/experience), then I’d suggest “best practice” should be to proactively to do this for the patient. After all, many taxi drivers video every client – but not perhaps for the same reason! ;-)

    The technology is up to it – are the doctors?

    • Roni Zeiger says:

      Neil, I look forward to a more transparent day when this is one of the many things we can consider when choosing a doctor.

  10. […] Should Patients Read Doctors’ Notes?  Wrong Question (Roni Zeiger, Google Health) […]

  11. di says:

    Who’s in charge the docotor or the nurses?

    Nurses tell me things & I don’t think my doctor knows the whole story, here’s what happened. ..

    I went for another opinion, it’s a pelvic pain clinic, So I figure this will be the place to get answers, There version of pelvic pain & my version is so wrong. to me between the hip bone & lower is the pelvis, What this place really meant is pain during sex & buring with urination. So she said she can’t help me but she did offer me interstim for my pelvic pain.

    I decided to try chiropractor & my pain got worse but then I’d have 5 hours of relief, but pain came back with a vengance. I really enjoyed having some relief so I called my obgyn & asked if he’d mind refilling my pain pills because of these new flares, I left a message on the nurse voice mail. she called & left a message, no more, it’s not an obgyn issue see my family doctor. If i have any questions to call the office manager. (why an office manager about my health???)

    This obgyn has done 3 surgeries for pelvic pain including a hysterectomy, So I called & she said we were just talking about you (the nurse & office manager), I said you must have a diagnosis if you know it’s not a obgyn issue, & she said Dr. M won’t give you a refill. we have record that doctor M ordered Physical therapy so you need ot see your family doctor,

    I’m getting upset, why would this be told to me by a office manager?? since she’s pushing to go to the family doctor, is she telling me my obgyn doesn’t want to be my doctor?? I interrupted her & said forget the pelvic pain issue, Does dr M want to be my doctor? she said their practice will see me but a nurse practioner will see me.

    I’m hearbroken now, the only doctor who’s stuck by me, & did 3 surgeries to me, is pushing me off to a nurse,

    I e-mail jokes to this doctor, we’ve been through so much that I was thinking him as my buddy & my doctor. Now this & not from his mouth.

    So I e-mailed him, “sorry if I offended, I understand about the vicodin, I’ll miss not having you as my doctor,

    Best wishes,

    He replies,

    di, I’m confused, Mike

    Now I’m thinking, what happened????

    I e-mailed him the story above, I’m wondering if he had her do his dirty work or if she just is taking charge & not running questions by my doctor. I don’t know, this whole time if he has been filled in on all the difficulties I’m going through, I’ve just left messages with the nurses stationin the past. Did he tell her I’m to see a nurse practicioner??? I have so many questions. I really would like to talk with him.

    I have his e-mail, but I don’t want to take advantage of a friendship, but I really need to know his honest feelings. If he don’t want me I need to move on. It would hurt because he’s obgyn 4 and he’s my favorite.

    Doctor/patient relationship is so hard, I understand he’s busy & nurses help, can’t I have any access?? I asked to make a quick appt, & he’s booked 4 months out!

    How does one communicate?
    di

    • Di,

      There’s no way I can know what happens in their office, but based solely on what you wrote above, I too would wonder if he knows. So I wonder if you explicitly said, “Mike, the office manager told me the other day that I’m to be seen by the NP. I’d much rather be seen by you. Is that possible? If not, why not?”

    • Jane says:

      I call this “gaslighting” as in the Bergman film, ‘Gaslight’. It’s no joke. You question even what you can see before you in writing, or messages on your telephone. It isn’t you.

  12. Di says:

    My story keeps going, and here’s another example of me needing my health records.

    I seen a doctor who wants me to have an lumbar MRI, I got some 5 hrs relief from my chronic pain after a visit to the chiropractor. So my family doctor thinks it’s reasonable to have a lumbar MRI and see if there is a problem, maybe referred pain.
    Now I get a letter from the insurance company that there are other options to try before getting an MRI and I need to send them copies of tests, physical therapy, types of prescriptions used.

    They sent it to me & My doctor, Now I happen to have my records, but did they really mean to send it to me?? how many people have it??

    Also as for insurance, my health plan has changed each of the last 3 years, so they don’t see the submitted bills for PT in the past? Nor all anit-depressants they’ve given me to help with the chronic pain. I’ve also went to multiple myofascial release clinics that my doctors didn’t prescribe, but I’m just searching for relief. I know the insurance company doesn’t know about them.

    I have 14 doctors with various opinions, So again I have no clue what records they have access to.

    I don’t know if this is due to obama care coming or what, becuase I had a pelvis mri 2 years ago, They never wanted documentaion of everything I tried– so what’s changed????

    Also this request is coming from a board, my insurance company subitted the claim too to see if it’s necessary, again I thought this was the doctors call, now it’s an outside company that I know hasn’t seen anything about me before,

    So I e-mailed the company to find out more info.

    Sometimes even having the records, I don’t have what I need

    I just sent a request to my pharmacy to give me a print out of the prescriptions the last 4 years so I can show them the, anti-depressant, lupron, and other things that were tried for this chronic pain.

    thanks I hope you don’t mind me posting. I’m just curious if you read what I’m going through if it has any effect on your opinion.
    Diane

  13. […] 80% of patients in the study claimed to have a better understanding of their medical issues. Another article was written in 2010 by a doctor, Roni Zeigler, who is opposed to patients reading su… Outpatient notes are filled with medical terminology such as hemagioma, which is just a fancy word […]

  14. Karl says:

    In Florida it is illegal to record a conversation unless both parties agree. If you didn’t tell the doctor at the appointment and refer to it at a later date he/she will send you a letter dropping you like a hot potato.

    • Yes, Karl, too much of the system is still optimized around anything BUT supporting the patient. Anyone who covertly records anything would probably not be inclined, I’d think, to say so later!

      • karl says:

        True indeed Dave. I know my lesson now. Last year I surreptitiously recorded a doctor session. I called their office a few days later to schedule what the doctor told me to do. They told me that was not in the chart. He wanted me to see a different doctor for a different treatment first. I said that’s not at all that he told me or what we discussed. Again she said that’s not what’s in the chart. I said I recorded it and it’s not what he said. She said someone would call me back. Two days later I got a certified letter dropping me. I know better now. But in that case I was trying to make her aware that my chart was wrong. I’ve gone on to learn that the place has a reputation of baiting people in and switching them to something else.

  15. Di says:

    when my mom had her triple bypass I did take my audio recorder, just because future appts, always ask for a medical history & I type it up & keep it in her wallet so I know which side is the stent, which side her kidney is dead, how may by passes. it’s her health & Doctors ask the questions, they don’t always read the charts.

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