Epilepsy Talk

Your Medical Chart — What’s On It? | August 1, 2021

When asked if they’d like to see their doctor’s notes, patients in two new studies overwhelmingly said yes. But doctors weren’t nearly as enthusiastic.

The idea of opening up doctor’s notes has been around for decades. Advocates figure that patient oversight will reduce medical errors and help patients be more engaged.

Patients have a legal right to see their records. But actually getting those notes — especially those that doctors take during a visit — can be painfully slow (and expensive!)

Moreover, doctors and hospitals can charge whatever they want for photocopying, and can take up to two months to deliver!

Now that doctors and hospitals are using electronic medical records, however, the process of sharing should be relatively cheap and convenient.

Not surprisingly, the majority of patients thought that open visit notes were a great idea. They said it would give them more control and be better prepared for appointments. They also said it would help them do a better job following doctor’s orders and avoid mistakes. 92 to 97 percent of people who took the survey were in favor of full access.

But the doctors are balking. Most thought the patients would be “more confused and worried” if they saw their notes. (A lame excuse if ever I heard one.)

The doctors also thought they’d have to work more as a result.

For them, the prospect of patients peering over their shoulders meant they would have to be less candid, especially when writing about such touchy subjects as cancer, obesity, substance abuse and mental health.

“I think the doctors felt that they owned the notes,” Delbanco, a professor of medicine at Harvard Medical School, told Reuters Health. “The medical records are treated like a state secret in most situations.”

What would happen if patients were encouraged not just to see their medical records but to take them home, study them and really own them?

What if they became better informed about their care plan and diagnostic results and dared to question their doctors or even doubt their decisions?

Is this a Pandora’s box? Or is it a case of “knowledge is power?”

The good news is that health systems are making it easier for patients to get access to prescription lists, lab results and, sometimes, doctors’ notes.

Delbanco said one reason is that “the whole world is becoming transparent. The other is that computers make it easier.”

Although most doctors don’t think that showing patients their records will increase lawsuits; patients may be able to point out mistakes or omissions. But other concerns remain.

Will physicians’ notes change if they know patients are reading them? Will patients withhold information they don’t want recorded? Will they be more likely to seek a second or third opinion?

The shared medical record, Dr. Delbanco said, “is a new medicine. It’s designed to help more people than it hurts, but invariably it may hurt some patients. Medicines are never perfect.”

Another article of interest:

Find out what your doctor really thinks about you  http://www.cnn.com/2013/07/01/opinion/prager-your-medical-records/index.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+rss%2Fcnn_topstories+%28RSS%3A+Top+Stories%29&utm_content=My+Yahoo

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  1. I am one who supports the transparency of not only doctors nots, but any and all records that could be useful to a patient in helping them stay engaged an playing an active roll in their health management. This includes medical device data that may be manage by third party vendors. In my case this relates to data tat is collected by my responsive neurostimulator. While it took me quite a while to explain clearly what records I wanted (it took me some time to figure out what the reports were called and who I needed to talk to to get the request handled (as my hospital does not manage the data), I finally obtained my data. The records were sent to me in PDF format. The records included over tree years of data. Thee were about 975 reports (almost 7.000 pages of data) that listed the seizure and interictal epileptiform discharges (aka spikes) recorded by my RNS. The data when matched with my daily logs gives me a better understanding of how my sleep, diet, mood swings, headaches, etc affect me. Although it took some time to obtain the records, it was well worth the wait.

    Liked by 1 person

    Comment by Eric Roybal — August 1, 2021 @ 9:49 AM

  2. I think it should be easy and cheap … one of my
    husband’s doctors charged 50 dollars a page … the doctor considered my husband a difficult patient as he refused to try Keppra again… He had Keppra rage on the first go-around. We had a good discussion….

    Liked by 1 person

    Comment by the accidental activist — August 1, 2021 @ 4:32 PM

  3. Reblogged this on accidentalactivistsite and commented:
    and it’s important to know your medical records and should be free… Just saying

    Liked by 1 person

    Comment by the accidental activist — August 1, 2021 @ 4:34 PM

  4. I go to a large multi doctor practice which has a patient portal. This portal gives me access to all lab test results, summarized visit notes and my patient data. I can ask my doctor or PA questions via the portal and update or correct the list of medications and OTC products that I take. It is invaluable.

    I personally have also kept a data base of all test results and weight records going back for many many years. I guess you mignt call me a data hoarder but identifying trends before they become problematic can be helpful.

    Liked by 1 person

    Comment by Michael H — August 1, 2021 @ 6:21 PM

    • I also have a patient portal for both my PCP and my health care system. What a life saver! (No pun intended.) Especially when it comes to meds and med mishaps.

      That’s been my experience, anyway. You’re a lot more diligent than me!


      Comment by Phylis Feiner Johnson — August 1, 2021 @ 8:11 PM

  5. It seems like to me this will only allow anyone else to have medical records of a patient, once a patient has a little power to get them for their own uses, even if it is just to TRY to correct errors of those records/reports. If any employment agency like INDEED, or other like them or MANPOWER & others like them some can get physical reports as it is when you have a physical for any employer, or from your personal doctor, so then WHAT ELSE would they believe they are entitled to having ? Next thing will happen is that THEY will look at your medical report to see if you are worth hiring,, before they will consider counting any skills or a character trait or flaw you may have, and where or what comes 1st with you values about life. Today the more different from a normal life you have, the better the chances you will get a job, but if 1 seizure in your life has ever happened, SHHHHHHHHHH say nothing about it. INDEED, MANPOWER & OTHERS especially STATE run operations for placing people in employment NEVER benefits anyone who has seizures, at least that’s how it’s been in PA, MD & WV where I have tried in the past. It will never change either until those state workers start to TRY to put themselves in our shoes & live with seizures all their life or for over 10 or more years before age 21, and 30 years or more after 21. And all doctors patient records WILL BE & ARE either going to work against you or for you, based on the drugs you take & what they doctors will say IF you should work for whoever, no mater WHAT & HOW you think of what you can do otherwise. Notice who I did not mention who has ”their right” to your medical records. Just say,,,,, you better be taking AED’s.

    Liked by 1 person

    Comment by James D — August 1, 2021 @ 8:37 PM

  6. Working w/ several Neurologist and one Epileptologist, they can either be very detailed in their notes or hospital notes , or short and scribbled. I work w/ Neurologists for over 20 years and had to explain over the phone what things meant and made appts. So patients understood what is going on. Some Drs . Ask us to explain and the Epileptologist always takes his times to explain.

    Liked by 1 person

    Comment by Toni Robison — August 1, 2021 @ 9:42 PM

  7. Laying down in hospital bed after having another one of my grand mal seizures, the RN in the intensive care unit caring out my blood test tells me “wow, your blood sugar level is perfect”, adding that “most people who have seizures are susceptible to diabetes”.
    Surprised at her comments at my “blood sugar level”, I said I’m not diabetic & this is the first time I heard of anyone telling me of my blood sugar level & connecting my seizures to diabetes.
    Few weeks after this intriguing event, my primary doctor calls me to tell me,,, “your blood sugar level is too high & your Dilantin level is toxic”, after visiting the doctor for previously scheduled check up.
    Surprised with the Doctor’s “new diagnosis” compared to the RN’s earlier test results, I requested that the Doctor print out his test reports & mail it to me.
    But I was shocked to find out that the very same Doctor I’m entrusting with my wellbeing was NOT pleased to just print out my test reports & mail it to me for current & future reference to my blood sugar test reports.
    The incident made me wonder,,, what’s the point of visiting doctors who can not stand up by their integrity, if they believe & trust their professional skills to diagnose patients & present their evidence for the patients to follow up with the medical struggle?
    What makes the medical establishment entitled to deprive patients from their medical records while the medical establishments have no problem prescribing legitimate or/& illegitimate medications to patients in desperate need of medical treatment?
    It’s perplexing. Isn’t it?

    Liked by 1 person

    Comment by Gerrie — August 1, 2021 @ 11:05 PM

    • How long after your visit to the hospital did the physician give you the information. What was his specialty? Hospital specialist vs physicians sometimes communicate differently!

      Liked by 1 person

      Comment by Toni Robison — August 1, 2021 @ 11:24 PM

      • Toni,
        I’m talking about the same Neurologist I had seen for many years before.
        But what made this particular visit to my Neurologist’s office any different than many other visits I had with him for many years before is I happened to have a grand mal seizure two weeks before my scheduled appointment for periodic check ups with the Neurologist.
        Therefore, until this particular incident were the RN told me that “Wow, your blood sugar level is perfect”, I never had any clue that seizures can be related to high blood sugar level or diabetes.
        That’s why I was surprised & shocked to hear the Doctor telling me that ” your blood sugar level & Dilantin toxic levels are too high”, after many years of prescribing my medications, 600mg/day of Dilantin & adding 2000mg/day of Keppra.
        And after two decades of medications, I’m surprised how/why my Kidney & Liver have not exploded yet. 😳!
        Therefore, while I’ve no problem understanding there could have been some sort of miscommunications taking place between the hospitals & my Neurologist, I never expected him to be too defensive & hesitant to just print out & mail his lab test reports to me for current & future reference to follow up with my blood sugar level test reports.
        I wonder how difficult can that be for a Neurologist to understand?

        Liked by 1 person

        Comment by Gerrie — August 2, 2021 @ 5:55 AM

      • Toni, The Neurologist finally mailed the test reports 3 months after my request.

        Liked by 1 person

        Comment by Gerrie — August 2, 2021 @ 5:57 AM

  8. You can get the lab results! I am sorry you had to go thru this. You doc or office staff should help you get the information if you wanted a print out. Explaining the reason is a lot better.

    Liked by 1 person

    Comment by Toni Robison — August 2, 2021 @ 7:50 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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