medical records

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How Are We Today? Study Lets Patients Help Write Medical Notes, Google Doc Style

(Life Mental Health/Flickr via Compfight)

(Life Mental Health/Flickr via Compfight)

First, beginning about five years ago, came the OpenNotes study. Researchers found that when they gave patients access to their primary care doctors’ written notes, the patients said they got better at taking care of themselves, particularly at taking medications correctly. And contrary to some doctors’ fears, the notes did not tend to cause offense or avalanches of questions.

“OpenNotes” caught on; Some 5 million patients’ records around the country now use it.

Then came the next bold move: The researchers, centered at Beth Israel Deaconess Medical Center, launched a pilot program to open some psychiatric notes to selected patients. (The journal headline: Let’s Show Patients Their Mental Health Records. Our headline: What Your Shrink Thinks.)

And now, the open records movement is moving beyond transparent, to interactive. That is, what if you could not just see your doctor’s medical notes but actually comment on them and contribute to them? As you do, say, when you collaborate online with colleagues on a project in Google Docs?

That’s the next step, says Jan Walker, co-director of the “OpenNotes” project and a researcher at Beth Israel Deaconess and Harvard Medical School. With a new $450,000 grant from The Commonwealth Fund, researchers plan to develop and test “OurNotes,” an interface that will invite patients to contribute to their own medical notes.

Our conversation, edited:

Given the self-obsessive behavior of some people I know who use Fitbits and other health trackers, I think if I were a doctor I’d fear a huge deluge of data into my patients’ health records: “I took 6,000 steps and slept 6:27 hours…” How do you address that?

Jan Walker: One of the frontiers here is making decisions about what data is really paid attention to. As we invite patients to contribute to their records, as we invite patients to upload data from home devices into their records, there are going to be many new inputs of data into the medical records, from technologies that probably don’t even exist yet.

For clinicians, this can look like such a flood of data coming toward them that it’s impossible to pay attention to, to distill it and act on it, and be responsible for understanding everything that’s coming in. So one of the interesting parts of this research is figuring out how to highlight important things for clinicians, and let the rest just be stored.

We will face some of that with this project; perhaps we will be able to have patients flag things they think are important for doctors to see right away, versus just things that are reminders to themselves or things they want to have in the documents.

So will it be kind of like editing with someone on a Google doc, where you can see who did what?

We don’t know yet but we’re thinking about things exactly like that.

What are some examples of uses you imagine?

OpenNotes co-director Jan Walker (courtesy)

OpenNotes co-director Jan Walker (courtesy)

If you’re a patient, you might have gone to the doctor with an infection and been given antibiotics. So you might write down in this record when your symptoms abated or how you did with the antibiotics.

Similarly, you might read in your notes that the doctor reminded you to exercise, and you might keep track of your exercise regime to discuss that with your doctor at the next visit.

Or, in between visits, you may think of things that you want to talk to your doctor about on the next visit, and you would, in essence, set an agenda for yourself so that when you get to that visit, everything gets covered.

And the doctor could look at your agenda beforehand and be more informed, instead of looking things up on the fly?

Exactly. If you can set an agenda before you get to the visit, it gives the doctor a chance to prepare.

Another possibility would be to work with the clinician actually during the visit to write this note. Perhaps the clinician starts the note while you are still sitting there in the office, and you look at what’s being written, you comment, you add, and so it becomes almost a co-authored note.

Yet another use of this interactive feature would be to raise questions about things you think might possibly be in error. Continue reading

How Do Doctors Hate Paperwork? Let Us Count The Ways

By Paul E. Sax, MD
Guest contributor

Everyone hates mindless paperwork.

But certain types are particularly annoying, seemingly designed to send you screaming into the night, dragging a broken fax machine behind you as your brain explodes.

Too strong? Take a look at this fax cover sheet I recently received about a patient who had been receiving IV antibiotics at home:

home care cover sheet

To get at the root of why this particular communication rankles so, let’s do a close reading of the cover sheet — an explication, a detailed description of the prosody and narrative arc, to borrow some words from my English-major days.

Starting at the top, working down:

  • It’s from “Health Information Management”: Even though names have changed a lot over the years — hardly anyone was named “Sophia” or “Emma” back when I was a kid — it’s highly unlikely that “Health Information Management” is the name of the person who sent this handwritten note.
  • It’s 5 pages. Pages 1 is this cover sheet. Pages 2, 3, and 4 are boilerplate documentation of what has already been done. And page #5 is a task that raises paperwork to a new level of torture — it asks for my signature in 4 ways: 1) Slow signature; 2) Fast signature; 3) Initials; 4) Printed name. That’s a first for me, let’s hope it’s the last. Continue reading

Controlling The Uncontrollable: Medical Records As Art

Rachel Perry Welty’s son was born three months prematurely, and spent the first eight weeks of his life in the Neonatal Intensive Care Unit at Children’s Hospital Boston. (This, after Welty spent the last 144 days of her pregnancy in bed, per doctors orders.)

Out of this anxiety-inducing maternal nightmare emerged two related pieces of art, one a literal transcription of her son’s 645 page medical chart, and the other, a color-coded rendition of his medical bill. Both works by Welty, a Gloucester-based conceptual artist, speak to the emotional extremes of the medical emergency: the deadening institutional jargon of the hospital barely concealing the sheer terror of a sick, painfully fragile baby facing an uncertain future. “It’s like dealing with a life that is out of control and trying to make it in control, however futile that may be,” Welty says.

In Transcription/Medical Record #32-52-52-001 (645 Pages) Welty hand copied every word of her son’s ICU medical chart on to twenty-three sheets of 24×18 inch graph paper. (She had to buy the records from Children’s Hospital for a few hundred dollars.) “A lot of people have asked me if it was therapeutic to do this,” Welty said in an interview. “But rather than remembering and reliving the difficult past, it was really about forgetting. I was trying to organize the pain of an experience by focusing on the utterly mundane task of transcribing the medical record, word for word, symbol for symbol.”

Transcription/Medical Record #32-52-52-001 (645 pages) (detail), 2001-2002 ink on vellum, 25 x 144 x 1 inches (23 sheets, each sheet 24 x 18 inches) Courtesy of the Artist, Barbara Krakow Gallery (Boston), Gallery Joe (Philadelphia), and Yancey Richardson Gallery (New York)

She says the year-long, daily effort of copying each character mimicked, in some ways, her experience at the hospital: putting one foot in front of the other and dealing with each new bit of information as it hit her. “You go day by day, report by report, bilirubin count to bilirubin count,” she said. Over the course of creating the piece, Welty found inconsistencies in the record, errors and facts that the doctors hadn’t disclosed. She describes the painstaking effort of creating the piece as “monk-like” or, alternatively, an expression of “maternal devotion.” Continue reading