Patients seeing the visit notes their primary physicians entered

This item has nothing to do with OpenNotes itself – it’s what I’m seeing now that I’ve started accessing my doctor’s notes. In short, I see the clinical impact of not viewing my record as a shared working document.

Here’s the story.

In OpenNotes, patient participants can see the visit notes their primary physicians entered. Note – primary, not specialists. I imagine they needed to keep the study design simple.

So, here I am in the study, going through life. Recently, I wrote my first realization: after the visit I’d forgotten something, so I logged in. There it was:


3. Dermatologic. I think this is actinic keratosis and needs to be removed. Refer to dermatology.

I’d reported a crusty lesion on my forehead at the hairline. I’d had the same kind of lesion last year, and the dermatologist had frozen it off. (I have a history of skin cancer.) This time, the need to handle it had slipped my (ever slippery) mind.

Several weeks had already gone by so I emailed Dr. Sands (in the PatientSite secure portal) asking if I should insist on a fast appointment. He said no.

Notice that all this happened without any phone calls, because I could do it online. And that means it all happened sooner (act in the moment, no phone tag). And it captured the action in the moment when I thought of it.

[These are all well known advantages of being online - in other industries, but still debated in healthcare, sigh. How can an industry founded in science ignore evidence from other industries?]

Last Wednesday I saw the specialist. On my way out I found myself expecting that I’d go home and update the notes in PatientSite. Then I realized I can’t – because at present the visit notes are read-only.

More to the point, today the visit notes are an unstructured blob of text. I realized:

  • In my record we should have an open issue,under dermatology (or “skin,” for users who want simple vocabulary): “Have dermatologist check out actinic keratosis.”
  • This would essentially be just like a customer service issue-tracking system,or a software developer’s bug-tracking system, with data like this:
    • Reported by: Sands, D.Z.
    • Severity: unknown
    • Follow-up plan: see derm
    • Status (open)
  • On that item, the specialist (or I) would add
    • Seen by Dr. Digby, Chestnut Hill, 8/4. Lesion is gone.
    • Status: resolved.
  • As with customer service systems, I could filter my view various ways: Open Issues, Dermatology History, date ranges, etc.
    • All the software to do this has existed for many years, folks.
  • If this doesn’t seem important for you yourself, think about it as empowering you to take care of your child, or an aging parent. All we’re asking is that we let our doctors help us help ourselves. With fewer phone calls.

Note: there are two big deals here:

  • My ability to add notes, even if another doc isn’t in the system.
    • I’m still constantly annoyed that doctors at my hospital aren’t required to be on PatientSite, because they’re not employees, they’re independent businesses, and that business relationship trumps better care. In essence although it looks like an office of my hospital, it’s really just a “doctor mall” with shared office services.
    • So I can’t secure-email them and I can’t make appointments online – that still requires phone calls when the office is open. Ugh. And sometimes it requires dealing with an impatient clerk. Double-ugh.
  • Issue tracking. At present the visit notes might just as well be a Word file: one big blob of text.
    • No, actually, a Word file can include indexing, headlines, pictures, boldface for emphasis, table of contents… today’s system is more primitive. (How do doctors function with tools like this??)
    • So today it’s just like a plain text file (Notepad or TextEdit).

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).

If this sounds like patients climbing into the driver’s seat, well yeah.

Dave deBronkart, also known as e-Patient Dave, blogs at and is the author of Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer and Let Patients Help!

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  • family doc

    Pre- EMR, I did my best notes by dictating in front of the patients. After the loss of efficiency from our EMR, I’m still working my way back to this. I’d like to enter notes while the patient watches on a large desktop monitor. However, the current pace demanded by the low payments in primary care makes this very difficult.

    So you’re now interacting with your physicians online, but how are your physicians getting paid for their time? I’d love to handle more patient interactions without an appointment but most third party payers insist that I do this for free. That’s not sustainable.

    A cash or concierge practice could easily offer both of these services to patients now but not those of us still taking third party payment.

  • Bruce Hopper Jr MD

    The HelloHealth platform is the ONLY cloud-based, PATIENT-CENTERED EMR. You have a username and password and, as long as you have an internet connection, you’re good to go. It also interfaces with Google Health so that you can keep diagnoses, tests, etc up to date. The point is YOU are in charge of this info. Big box hospital-based practices essentially own your EMR. If you move or leave a practice in their system, you start over. Independent, private, direct medical practices are growing nationwide. Many of them use a sustainable EMR such as HelloHealth.

  • Taylor

    Do not want. This does not sound like the kind of care I want from my doctor. I don’t want to email my doctor about my problems/concerns. I want to go in and see them. If it’s really bothering me I have no problem paying my copay and waiting to see the doctor. Now maybe for following up or asking a question I forgot to ask I’d consider email, but this sounds like an appointment via the Internet and that is disturbing.

  • IVF-MD

    Trying innovative new ways of doing things is always exciting. Thanks for sharing! There are some bureaucratic restrictions and ongoing cautions one has to overcome before communicating by email with patients, but for the patients who choose to do so, I agree that they love it!

  • primary care

    I can see where this would help, and I have patients who think they are the only one in the universe. I can forsee 6 pages of email, as I wonder “what is the question….?”
    (I spend 20 minutes at least with each patient, rarely double-book, and for any complicated patient at least 40.)

  • anonymous

    why would i as a physician want to share the ability to write notes with the patient? if s/he writes something in, am i responsible for reading the changes? if i disagree, am i responsible for communicating that with them. if patients want a copy of my note for their file, that is fine. if they want to make additions for their own personal use, also fine. nothing is stopping them.
    for every responsible patient like e-dave, there are 10 more daily who would fill it with frequent communications of questionable importance. i wonder often if that is where the disconnect occurs-we need a system to function often for the least capable, and the most capable are frustrated when they see what could be possible if everyone were like them.
    also, when email communications occur, is that screened by nurses the same way the phone calls would be, or is that something that takes time away from the physicians day unfiltered?

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