Epilepsy Talk

What 2/3 of doctors don’t want you to see… | April 22, 2023

When asked if they’d like to see their doctor’s notes, patients in two new studies overwhelmingly said yes. But doctors aren’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. (Patient advocate Regina Holliday was charged 73 cents a page when she asked for copies of her husband’s chart when he was dying of cancer.)

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 do believe that ”knowledge is power” and what better way to know other than ”listening to your brain.” As my own family doctor tells me,, THE BRAIN DOES LIE,, and I said to him That’s Bullshit !.. and asked if What if I ignored all the things that my brain had told me in the past 35 years or more ? He could not say I was wrong as he knew from past visits, NOT related to seizures, how I was them & still today know what my body is lacking or needing, and when he wanted to give to me a FLU SHOT 8 years ago I said WAIT A MINUTE,, & I asked if HE WOULD BE ACCOUNTABLE & RESPONSIBLE if a GRAND MAL SEIZURE happens in the next 1 to 12 hours, that may happen before I got back home from his office there ? He then said ”IF I THOUGHT A SEIZURE MAY HAPPEN, HE DID NOT WANT TO GIVE ME ANY SHOT FOR THE FLU,, needless to say I did NOT get the flu that year or any other year. NO COVID either with NO SHOTS, and they will not ever make me get any drug from a needle, because of WHAT I KNOW, & WHAT my brain over the decades has told me to NEVER get drugs from needle JABS going into your veins. Now What would my brain chemistry would had been like IF I believed my family doctor & took that flu shot & other shots since then ? No coincidences IF you know HOW to listen to your brain & WHAT is it telling you in HOW you love your brain & next yourself.

    Liked by 1 person

    Comment by James D — April 22, 2023 @ 1:48 PM

  2. In the UK you can access such info easily, with a fee for medical ones under the law Freedom of Information,which gets you anything except those which are Top Secret, it’s often amazed me to see what my doctors think of me, even found a letter from my neuro to his friend, also a neuro, moaning about how difficult it is to treat me, with bad words! It’s great to know what;s really wrong with you, is your doctor taking it seriously to treat you, see things like x-rays that your doctor hasn’t bothered to fully discuss with you

    Liked by 1 person

    Comment by Miss Gail Barry — April 23, 2023 @ 5:39 AM

  3. Hi Phyllis!
    I am very happy! Thank you so much for the wonderful posts! Be very happy! I wish it from the bottom of my heart!
    After we wrote about diets with you, I implemented the ATKINS DIET. And I also fixed the medical error when writing medicines. My pharmacist helped me, my neurologist refused. He gave another opinion. I am very pleased. Seizures at 10 days unlocked in 30 days.
    It hasn’t happened in 6 years.

    Liked by 1 person

    Comment by Goro Dimitrov — April 26, 2023 @ 2:35 AM

  4. Hi Phyllis!
    My personal neurologist, never looked at a seizure diary. Just asking how you are. If I answer that I am not well, he increases the dose of the medicine or prescribes a new one.
    I am also being treated by a homeopath, which helps me a lot. With his help and that of a homeopath, we discovered the error of a professor of epilepsy. This error continued with the personal neurologist, who is of a lower rank than a professor. In Bulgaria, drugs prescribed by a doctor of high status cannot be withdrawn by a doctor of lower status.

    Liked by 1 person

    Comment by Goro Dimitrov — April 26, 2023 @ 2:45 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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