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A Story Of Online Care Without OpenNotes

Next in our series on my experience with OpenNotes, a project sponsored by the Robert Wood Johnson Foundation’s Pioneer Portfolio.

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. Five weeks ago 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).


I welcome comments from people (patients, providers, vendors) whose systems do have these features. Vendors, just keep it factual, non-commercial, please – link to fact sheets or demos on your website.

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

*This blog post was originally published at*

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