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Study: Doctors should share notes with you
Doctors' notes can help patients understand why it's important to take their medications, a new study found.
October 1st, 2012
05:00 PM ET

Study: Doctors should share notes with you

After you leave your doctor's office, there's a crucial part of the appointment that happens behind your back: Your doctor writes a note describing how the visit went.

The note might say that your blood pressure is higher or better, or that you seem more or less stressed than previously. It may mention any prescriptions you're supposed to take and why, and when you'll be back for a follow-up.

A new study in the journal Annals of Internal Medicine recommends giving patients access to those notes.

"The note is sort of the narrative that holds everything else together," said Jan Walker, study co-author and nurse at Beth Israel Deaconess Medical Center in Boston. "That’s where the story is."

Methods

The experiment took place at Beth Israel Deaconess Medical Center in Massachusetts, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Washington. At these centers, 105 primary care physicians and a large number of patients - more than 13,000 - participated in this study. However, only a little over 5,000 of these patients opened at least one doctor's note and turned in a survey about the experience.

During a period of one year, participating patients received an electronic notification when they could view a doctor's note through a private online portal.

Results

Researchers found that many patients who viewed notes were more compliant in taking their medications, and that doctors often noticed "some patients seemed more activated or empowered," the study found. Frequently, doctors said making notes available strengthened relationships with some of their patients.

In general, people tend to forget what happens during their doctors' appointments. Although they can request to see their files, often their official record will only be partial and will not contain notes. The notes can be a reminder and an insight into why certain medications were prescribed, said study co-author Dr. Tom Delbanco, also of Beth Israel Deaconess Medical Center.

When the experimental period ended, an impressive 99% of patients eligible to view notes said they wanted the program of "open notes" to continue, and no doctor said he or she was ceasing this practice.

About one-third of participants expressed concerns about privacy, however.

Implications

"Our goal is for this to become the standard of medical care," Delbanco said. "Patients are extraordinarily excited about it. Doctors were nervous about it, and their anxiety proved unfounded."

Taking doctors' notes out of their black box gives the decision about confidentiality back to the patient, Delbanco said. Doctors can't share their notes with anyone else except the patient, but the patient can choose to show parents, children, friends and even social media connections what their doctors recommended to them. Or, they can keep it private.

Limitations

The study only looked at three geographical areas, so hospitals in other parts of the country may have different experiences. Also, only 41% of patient surveys were returned, so there may be a lot of participants who felt differently about the doctors' notes who did not respond.

Also, doctors volunteered to participate, meaning this was not a randomized design, and doctors may have had some bias about the practice of making notes accessible.

The participating doctors were primary care physicians, but the researchers believe the practice of opening up notes to patients can extend to specialists as well as nurses, physical therapists and social workers.

"We all work with patients and have information that they might find useful," Walker said.

Next steps

Walker and Delbanco are meeting October 11 with stakeholders in Washington to talk about how to move this forward. Providers, clinicians, the American Medical Association, the American Hospital Association, consumer groups and other interested parties will discuss how this intervention could be done on a broader scale.


soundoff (30 Responses)
  1. Portland tony

    This is not a startling revelation. My primary care physician has a web site that tells me this stuff if and when I want.

    October 1, 2012 at 18:08 | Report abuse | Reply
    • Sherry Reynolds @Cascadia

      That is great! Most patient portals limit the information to lab results, after visit summaries but very very few unitl now have allowed you to see the actual "clinical" records that that the doctor writes

      October 2, 2012 at 01:51 | Report abuse |
  2. Tony

    Great Idea.. I agree.. I think we need all the notes that insurance has on patient at the patient's disposal..

    October 1, 2012 at 18:43 | Report abuse | Reply
  3. Becky

    Yes I agree that this info should be shared with the patient. I can go one further and say that even when the patient is under age and needs to know info that the parent would most likely not pass on to the child. This has happened to me as I am an adult now and was not told about certain aspects of congenatal condition until I became and adult, and now have no real plan for my present/future due to this lack of shared info.

    October 1, 2012 at 19:12 | Report abuse | Reply
  4. Mark Marcie

    I used to work in healthcare IT for almost a decade, I stopped that profession after I learned that hospitals have decided to make it so they CANNOT share records. Two of the largest hospitals decided they would not due to the possible loss of profits.
    How sad is it that they value money over your life, even if they swear an oath, the Administrative staff does not.
    While you lay and die, they quibble over pennies.
    I think it is in everyone's interest to see your record in real time, I know they are doctored up after the fact/death (sorry for the pun).

    October 1, 2012 at 19:17 | Report abuse | Reply
    • mj md

      Giving medical records without going through proper channels is a hipaa violation, a doctor cant even access their own records

      October 1, 2012 at 19:31 | Report abuse |
    • Sherry Reynolds @Cascadia

      You are ALWAYS allowed to share medical records for the care of a patient and since patients are also care givers they have the full legal right to their medical records.. This isn't new although both HHS Director of Civil Rights wrote a memo this spring clarifying that patients have the right to

      Ask to see and get a copy of your health records from most doctors, hospitals, and other health care providers such
      as pharmacies and nursing homes, as well as from your health plan;

      http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/righttoaccessmemo.pdf

      October 2, 2012 at 01:50 | Report abuse |
  5. George

    There is legally no such thing as an "offical record." A patient has a legal right to ALL records and if the patient orders a copy of all records, the medical people MUST comply with all records, which legally must include EVERYTHING. You must specially state that you want ALL records.

    October 1, 2012 at 19:21 | Report abuse | Reply
    • matt

      You sir, are completely wrong. A person does NOT have the right to have access to ALL his information, but only a PART of the information.

      October 1, 2012 at 20:17 | Report abuse |
    • Sherry Reynolds @Cascadia

      From the Office of Civil Rights – HHS

      You should know you have the right to:

      Ask to see and get a copy of your health records from most doctors, hospitals, and other health care providers such
      as pharmacies and nursing homes, as well as from your health plan; and

      Get the copy of your record in the way that you want – such as an electronic copy or a paper copy – if your plan or
      provider is able to do so.

      To make sure you know your rights and are able to assert those rights, the HHS office of civil rights has developed videos, pamphlets, answers to questions, and other guidance to help you understand your rights under HIPAA. To find these tools, go to the website, http://www.hhs.gov/ocr, and: they created a video, “The Right to Access and Correct Your Health Information” http://www.youtube.com/watch?v=JY1l5s8ED5c

      October 2, 2012 at 01:54 | Report abuse |
  6. nogods

    With each health care provider I choose to go to, or am referred to, I tell them on the first visit that I want copies of all doctor notes, evaluations and test results. I have been met with a blank stare from most of them. They then try to fashion some excuse as to why I should not be allowed to have a copy of MY medical records.

    October 1, 2012 at 19:28 | Report abuse | Reply
  7. mj md

    Just being honest, some patients (some people in general) are flat out nuts. I'm just saying...

    October 1, 2012 at 19:29 | Report abuse | Reply
  8. us_1776

    If I want to know something about my health condition I go to Google.

    Doctors never explain anything.

    .

    October 1, 2012 at 19:33 | Report abuse | Reply
  9. Lola

    Vets provide better instructions and information for our dogs than what we get. I'm healthy but I keep detail records of all my bloodwork, blood pressure, vaccinations etc.. I even made them into graphs. Patients have to be pro active and take notes. My iron came back high, I'm already researched and have all my info together so I can email my DR(I have that option in my plan). If I didn't do that nothing would get done. I have a great DR but she has many patients.

    October 1, 2012 at 19:35 | Report abuse | Reply
  10. Red

    Here's some thoughts from the other side:
    What about doctors' rights? Those notes are also used to pass on information to the patient's other physician. Sometimes there are things in the note that patients could take offence to, such as in the Physical Exam, in abdominal exam, if your patient is the typical American, you might write: Obese abdomen, soft, non tender... or under cardio exam: heart sounds not appreciable due to obesity. Under social history, a doctor might write: patient denies smoking but clearly smells of smoke.
    This is why doctors can't look at their own medical records. Physicians need to have the ability to communicate their thoughts on a patient's situation or outlook to other physicians, without the patient having access to those notes.

    October 1, 2012 at 19:49 | Report abuse | Reply
    • MCR

      Exactly. I suspect since this information has become so widely available to patients that physicians are far less honest in their observations. Writing that your patient was visibly intoxicated will now get a doctor sued, so they won't write it, and the next physician will not know about the likely drinking problem.

      October 1, 2012 at 22:52 | Report abuse |
  11. kate

    I worked in a hospital that did not allow patients to view the nurses notes. One patient grabbed his and saw the rn wrote sob(shortness of breath) the pt thought it was son of a bi#ch. He was but after it was explained to him what it meant he was very nice.

    October 1, 2012 at 20:17 | Report abuse | Reply
  12. matt

    Doesnt even matter, 90% of patients are clueless to whats going on, you can explain it to them 10 times, and they wont remember anything, and if they do, they remember it wrong.
    Giving access to files this easily, would just confuse most patients.

    One thing you dont realize, is frequently, Doctors do not give out diagnosis like you think, because its often very hard to correctly diagnose a condition, and it can be wrong. Most of the time, they give hypothesis on what could cause such thing, and the regular patient wouldnt understand the difference between an hypothesis and the real diagnosis, and they would be completely clueless to what is happenning.

    October 1, 2012 at 20:20 | Report abuse | Reply
    • Red

      Exactly! and a differential often includes oncologic causes, even for benign musculoskeletal pain, no matter how unlikely the doc thinks it is (at the bottom of a long list of possibilities). I can just imagine all the patients with fibromyalgia freaking out thinking they have cancer.

      October 1, 2012 at 21:26 | Report abuse |
    • Sherry Reynolds @Cascadia

      The study included people from all different economic backgrounds – including those that are homeless and they all seemed to be able to handle the information.. Since the vast majority of health care takes place outside of the doctors office it really helps to have the ability to read your records when you get home.. If you read the study 99% of the patients liked the option and in the majority of cases they were better able to understand their care and participate in it..

      Change can be difficult for most people but this is a ground breaking study and will be the new standard of care..Once some doctors start to do this those who don't open up their notes will not be as attractive to highly educated patients.

      October 2, 2012 at 02:00 | Report abuse |
    • Red

      I can totally see how a conversation would go:
      Pt: "You think I have cancer???"
      Doc: "No, I think it is very very unlikely, but it is a remote possibility."
      Pt: "You think I have cancer!! Ok, I want full body CT and MRI."

      It doesn't matter if 99% of patients liked it, of course they liked it, they get more information than they know what to do with.
      But if our healthcare costs soar 50% due to unnecessary tests, it is not cost efficient.

      It's like this: imagine if all CT scans were free. It would be great if we could all get full body scans and get all this info about ourselves. But imagine all the freakout following incidental normal variants that look like malignancies. Hence, you could see, how if CT scans were free, even if patients wanted it, it would not be in patients' best interests to have that information.

      October 2, 2012 at 09:03 | Report abuse |
  13. Matthew

    That access would be beneficial. Hopefully the word "difficult" doesn't show up in the doctor's note describing me.

    October 1, 2012 at 20:57 | Report abuse | Reply
  14. dublinan

    Insurance companies are sure to fight this, they don't want doctors to have easy access to patient information. As a web developer I have dreamed and thought about how great it would be if I could create a portal/app/website that would connection doctors to patients effortlessly.

    October 2, 2012 at 12:51 | Report abuse | Reply
  15. alice

    If a patient wants to see his file, he should definitely be allowed to. I do not understand the reason for secrecy. We should all be on the same team, should we not?

    October 2, 2012 at 14:12 | Report abuse | Reply
  16. tomhua

    EBook sites http://www.znjnn.com

    October 2, 2012 at 21:59 | Report abuse | Reply
  17. tomhua

    The e-book website copy to a new browser to open http://www.znjnn.com

    October 2, 2012 at 22:01 | Report abuse | Reply
  18. billy hammond

    Doctors share your info more than you think. They even sometimes write articles about you. Lol.

    October 3, 2012 at 10:33 | Report abuse | Reply
  19. drj

    i agree that patient's should be able to have access to this, but what is going to happen the second they see an abnormal result? WebMD and thousands of dollars of unnecessary tests.

    October 3, 2012 at 15:17 | Report abuse | Reply
  20. jp

    I am a Veteran and all too often information is entered into the Doctor's Notes that were not neccessarily expressed during the visit or posted to your Medical Record's summary. Wether intentional oor accidental I feel that a patient should have unlimited access to their personal medical records to include Doctor's Notes. Unfortunately, a notation in your records can make the difference in your Benefits Claim processing when it is not clear or inconsistent with the original posting to the records. We can alleviate this Department of Veterans Affairs long drawn out process by identifying any inconsistencies or having your Doctor clarify or elaborate his/her statements in the Doctor's Notes. After all the Burden of Proof lies upon the Veterans and a lot of claims have been denied based on inconsistencies or not seeing the Doctor's Notes. I encourage you to do further studies in this area because all Hospitals do not release this information.

    October 9, 2012 at 12:38 | Report abuse | Reply
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    My company isn't guaranteed regardless of whether that publish is released by him only because nobody much more understand such as thorough with regards to my difficulties. You are perfect! Thanks!
    Taylor http://wiki.spanishcity.net/wiki/Solutions_On_what_To_repair_A_brand-new_Car_Head_Unit_That_may_not_Start

    November 8, 2013 at 21:40 | Report abuse | Reply

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