Epilepsy Talk

Your Medical Chart — What’s On It? | February 22, 2012

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. Not at my neurologist’s, but at my recent annual physical with my internist, the nurse asked me whether I wanted my “report card.” Surprised, I of course said yes, and my doctor delivered it to me. It was a list of everything he had discussed with me, test recommendations and results, and I was able to take it home to keep and study. This is the first time this has happened, and I appreciate it. I understand that in the case of cancer or other circumstances it might be different. But for now I’m happy with the more “open book” about me.


    Comment by Maggie — February 22, 2012 @ 7:52 PM

  2. Good for you! Maybe he can teach other docs a lesson!


    Comment by Phylis Feiner Johnson — February 22, 2012 @ 8:16 PM

  3. Even a used-car salesman trys to make you feel good for buying a lemon.

    It makes you wonder,,,What ever happened to the daysof “DOCTORS” going the extra-mile & doing anything possible to make their patients feel good & feel themselves proud for serving the greater-good of human breed?

    But,,, Lucky you Maggie,,, You finally got those who care for your well-being than those who consider your well-being an annoyance to deliver your “report-card” as a waste of time, energy, resources & hindrance from making MORE MONEY to window-shopping-health-business.

    As always, very interesting great article Phylis.


    Comment by Gerrie — February 22, 2012 @ 10:05 PM

  4. When I left Calif, for OK. in 2007, I went around collecting medical records($45.00). I aslo had my neurologist. make a special note and memo that my seizures were controlled under current dosage dilantin and that it was not to be change unless under an emergency or by request of the patient…with both of our signitures..


    Comment by mkfarnam — February 23, 2012 @ 12:34 AM

  5. Ironically, Charlie LOST all of his records when moving from Florida (where they botched his surgery) to NYC. In his case, it turned out to be a good thing.

    After all, they had the maps of scars on his skull to go by.


    Comment by Phylis Feiner Johnson — February 23, 2012 @ 12:44 AM

    • I so appreciated that my NY Dr looked at me with a fresh ‘eye’. Of course he asked me about my history, but he didn’t want to know what the other Neuro’s thought.


      Comment by Charlie — February 24, 2012 @ 1:27 AM

  6. I got 10 yrs worth of Records from Parkland in Dallas, B4 moving to Ga. For Free. According to my Daughter it now Costs per Page. 😦 Stupid me, after changing Ins. several times, I gave them to a Dr in Ga & don’t know which doc or Insurance Company got them. I still have All my MRI’s though. 🙂 I asked my new Neuro to Send for the Info from Parkland. But, I don’t think they did.

    Personally, I agree w/ Charlie. Every New Doc Should look at us w/ a ‘fresh’ eye. History is important. But, Dr Notes, especially those w/ Different diagnosis for same Problem, can be Confusing &/or Useless!


    Comment by candi — February 24, 2012 @ 3:32 PM

    • It use to be that records were transfer upon request of the patient or Dr.
      Now they don’t want to know your history. They just run you trough the tests again so they can
      charge you for every detail.


      Comment by mkfarnam — February 24, 2012 @ 4:23 PM

      • In the end, the MOTIVATING factor remains cashing in from the health problems of the patients than finding treatment for the health-problem of the patients.
        It used to be caring for the patients & now it seems milking the patients by any means necessary.

        TOO BAD,,, It sounds like one man’s misery is other man’s treasure.


        Comment by Gerrie — February 24, 2012 @ 9:28 PM

      • Gerrie, there’s no question about it. It’s no different than say, Funeral Directors. They benefit on the deaths of others.
        Or if a DR. cure’s and illness, they also cut the benefit being made from that illness when it was in existense.


        Comment by mkfarnam — February 24, 2012 @ 10:38 PM

  7. $$$ before healing?


    Comment by Phylis Feiner Johnson — February 24, 2012 @ 10:20 PM

  8. Gerrie, there’s no question about it. It’s no different than say, Funeral Directors. They benefit on the deaths of others..
    Or if a DR. cure’s an illness, they also cut millions of $’s being made from that illness when it was in existense.

    You don’t hear about things being cured anymore do you.
    Istread they go around the internet telling people that 5-10.00 will help fund this research to help cure this or that illness….which doesn’t exsist in the first place….


    Comment by mkfarnam — February 24, 2012 @ 10:45 PM

    • Isn’t that a little harsh?

      Yes, I agree there will never be a “cure” for cancer. It would literally put the hospitals out of business. 😦

      On the other hand, (Says she, with slightly jaded eyes)I think they WILL find a resolution for diabetes.

      Because there are so many people with both Type 1 and Type 2 diabetes, that it’s bound to be a mega money making enterprise!


      Comment by Phylis Feiner Johnson — February 25, 2012 @ 2:15 PM

  9. Sure, these days dying is becoming very EXPENSIVE, though I can see the justification of Funeral Directors milking the treasure of the DEAD people who does NOT expect to be HEALED ANYMORE or can NOT take their treasure to their graves with them.
    Therefore, it seems ONLY natural to transfer the treasure from the dead to the living, for the funeral services rendered, justified or NOT.

    But compromising, bartering & trading the well being of living Patients entrusted to the Doctor’s care seems outright fraud.
    Patients expect treatment & healing from the Doctors who swore to the “Health-Profession” with the obligation & responsibility to heal the living patients & NOT exploit their misery.
    Too bad, the moral values of the health-industry has turned to earning BILLIONS OF DOLLARS & GET RICH QUICK than rooting & curing for the barely-living-patient.

    BTW: While I understand that there are ALWAYS going to be very few con-artists who exploit the medical-fears of society. there is more to it than just few con-artists.


    Comment by Gerrie — February 25, 2012 @ 12:36 AM

    • “First do no harm…” That is the doctor’s oath.


      Comment by Phylis Feiner Johnson — February 25, 2012 @ 2:17 PM

      • Phylis,
        I wish as it was as easy as “DO NO HARM”.
        Sad to say,,, the Doctor’s oath has turned from “DO NO HARM” to milk the patient to death.


        Comment by Gerrie — February 26, 2012 @ 3:13 AM

  10. I really do’nt like to sound negative……but it’s the truth.

    Phylis, when I said that there’s no cure, I didn’t mean everything..


    Comment by mkfarnam — February 25, 2012 @ 4:37 PM

    • I know you don’t mean to sound harsh. You’re just realistic. I was being ironic when I quoted the doctor’s “oath.”


      Comment by Phylis Feiner Johnson — February 25, 2012 @ 11:29 PM

    • mkfarnam,
      I’m sorry to say but you have noting positive to contribute to this forum.
      Check it out & read back all your comments posted, you are either questioning the integrity of subject at hand or you are justifying the wickedness of the system, feeling no relations or sympathy to the patients who are risking their lives everyday by entrusting their well-being to Doctors who are more interested in milking the patient than curing the patient.
      I apologize for my opinions in criticizing you, but you could do better by putting yourself in our shoes & try to see why we are discussing our difficulties in this forum.
      Thank you for your consideration to our plight.


      Comment by Gerrie — February 26, 2012 @ 2:58 AM

  11. At John Hopkins Epileptologist at the time would print the report before I left with a report with me and one for the record.This was in the 2000’s .
    His associacte had an MRI done and I found out the cause of my seizures he did not type reports and give me a copy each physician is different in 2009.

    The Epileptologist I see now is harder to see. She pays attentions to you. I do not get reports.

    I just was in the hospital for 8 days. They thought I was having TIA’s I lose my speech and right arm went numb. Intermittently I told them about the Vagal Nerve Stimulator no MRI, transfer to the University hospital this is where my where my Epileptologist is. They never did and so the story goes. They changed meds and they felt I had a TIA. All I had was a seizure on the sidewalk and my neighbor thought the worse. I always have trouble w/ gait do to meds. My sodium level was down. I told them that is do to medication. You all know the story.

    They wanted me in rehab facility for 10 days. Massage sounded good. I wanted to go home and see my family and be w/ my pets!

    John Hopkins Community Physicians tells you your results of tests, medications allergies, and diagnoses. The Baltimore offices probably do the same too.


    Comment by Toni Robison — February 25, 2012 @ 8:29 PM

  12. Speaking of medical records,
    In SoCal I had a final eye(s) check out. I was told I had Glaucoma and an early catarac in my right eye. I wasn’t having any vision problems…(BTW Glaucoma is an side effect from Dilantin and I feel that I souldn’t have to pay premiums,.deductible,…. period!!!!).
    Anyway, I got a copy of my records….went to Oklahoma and last year I went to see an Optomotrist. He looked at my record and run me through 3-4 months of visal test and perscribed 2 types of eye drops, (40.00 per bottle)..
    Well, when this was done, the bill was over 1K$ resulting in NOTHING more than what was alread printed on record. I prefered to a catarac surgeon, but with a bill like that and a butget like mine, I wouldn’t be able to see a surgeon for at least a year.
    Just this morning I woke up half blind, so somehow I need to find help to pay for a surgeon. (Medicare will only pay a small percentage)


    Comment by mkfarnam — February 25, 2012 @ 9:54 PM

    • OMG Mike!

      I know that glaucoma is irreversible. It runs in Arthur’s family and the best they can do is take 2 sets of VERY expensive) drops to relieve the pressure in the eyes and help stave it off.

      Was there no indication of glaucoma or did they choose to ignore it. One would think if they had any sense, (or gee, maybe even if they wanted to save money in the long run), they would be proactive and start you on drops then. There must be some kind of medicare/medicaid help you can get for glaucoma!

      As for the cataracts, we all get them as we get older (like our age), they form halos or spots or floaters in our vision, but to go BLIND?

      There’s something desperately wrong here. Can you go to an ophthalmology clinic for help?

      You might look up http://www.nei.nih.gov/health/financialaid.asp
      The National Eye Institute’s guide to Financial Aid for Eye Care.


      Comment by Phylis Feiner Johnson — February 26, 2012 @ 12:06 AM

  13. mkfarnam,
    Imagine ending up in the hands of these Doctors.

    Death By Doctor: 3rd Leading Cause of Death in the US.
    Big Health Report News
    Filed under MEDICINE, SAFETY
    August 30, 2011

    “The popular perception that the U.S. has the highest quality of medical care in the world has been proven entirely false by several public heath studies and reports over the past few years.

    The prestigious Journal of the American Medical Association published a study by Dr. Barbara Starfield, a medical doctor with a Master’s degree in Public Health, in 2000 which revealed the extremely poor performance of the United States health care system when compared to other industrialized countries.

    The most shocking revelation of her report is that iatrogentic damage (defined as a state of ill health or adverse effect resulting from medical treatment) is the third leading cause of death in the U.S., after heart disease and cancer”.


    Comment by Gerrie — February 26, 2012 @ 3:06 AM

  14. Try JCL Hardship if you are needing funding, too.

    Mike take it easy!

    I am a little drugged from them changing meds last week but shouldn’t there be something for patient advocacy? Or is that stretching it? They do indicate the possibilities when you take the meds. oh, phooey answered my own question!


    Comment by Toni Robison — February 26, 2012 @ 4:13 AM

  15. Thank You Toni,
    I need all the help I can get.


    Comment by mkfarnam — February 26, 2012 @ 4:44 AM

  16. I know that some EFA offices have patient advocates and sometimes they are successful. Would it be worth a try to contact your local Epilepsy Foundation chapter, or is that whistling in the wind?


    Comment by Phylis Feiner Johnson — February 26, 2012 @ 4:34 PM

  17. I think looking at our records has multiple benefits for us. I grabbed records from a Doctor I had for 9 years. I also have records from a clinic I started at, and was with for almost 20 years.

    When I changed locations just over 2 years ago now, I brought down the nearly 30 years of medical history with me (paper) and they scanned it into their computer system. It made their learning about my history a lot easier on their end.

    Due to recent procedures and events in my treatment I was thinking about obtaining the records and notes about my surgery. I was trying to think how many (danged) stitches I ended up with. Pretty insignificant, but it would also let me how much was removed, where, and the lab tests on the removed tissue.

    However, speaking over anybody/everybody who has a Dr, we have to admit there ARE some people who starting obsessing and causing problems in their treatment. It gets worse when a small group of people read into their medications and thinking side effects listed are what they are having when it doesn’t exist in reality.

    Great posting Phylis, thanks for it!!



    Comment by Travis — March 16, 2012 @ 4:08 PM

  18. Sometimes a little knowledge is dangerous. 😉


    Comment by Phylis Feiner Johnson — March 16, 2012 @ 8:30 PM

  19. It can be scarry when it goes directly against what you’ve
    been told by Physicians…


    Comment by mkfarnam — March 16, 2012 @ 8:41 PM

  20. I think it would be a good idea for the Doctor’s to run through their notes because when I seen sight of my medical notes there was lots of errors!


    Comment by jocuz1971 — August 11, 2013 @ 5:34 PM

  21. That’s why you have to double-check on what they’re doing and be your own advocate.

    If you want to read a horrifying article try this:

    Medical Mistakes Out of Control!



    Comment by Phylis Feiner Johnson — August 11, 2013 @ 5:50 PM

  22. I see several people stating that they paid for a copy of their records. I’ve never paid for mine. Everyone is entitled to a free copy of their records. It’s the extra copies that they pay for.


    Comment by Tony Murray — September 20, 2013 @ 2:22 PM

  23. Yes, I think you’re right, Tony.

    Everyone is entitled to a copy. (But sometimes, you have to ask.)

    In fact, I think it’s a part of the Freedom of Information Act.


    Comment by Phylis Feiner Johnson — September 20, 2013 @ 3:51 PM

  24. Thanks again, Phyllis, for writing so many great articles! Very interesting to be sure.

    Liked by 1 person

    Comment by Kristi Russo — June 25, 2018 @ 10:41 PM

  25. When attempting to fill out a form for a med I needed some medical record details about
    I of course didn’t have a copy. So I called the md office thinking I could get a copy of one. I was told that it had been destroyed. They only keep medical records 5-10 years from last treatment or death. I had kept lots myself. But, when the form asked for a specific date I couldn’t produce it. I thought med records were kept forever, somewhere, esp. now with electronic storage. So if there are some details you think you may want get a copy earlier than that.

    Liked by 1 person

    Comment by Cindy Fiser — May 13, 2020 @ 11:43 AM

    • Good advice.

      I know my doc keeps medical records forever, but I’m sorry that I can’t say that for others.

      Hopefully, as you say, maybe that will change with the digital age.

      But it sure is good advice to get your records earlier and be the keeper of your own medical history.


      Comment by Phylis Feiner Johnson — May 13, 2020 @ 11:51 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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