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

January 23, 2015

Carey Goldberg

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)

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.

If you notice that something was recorded inaccurately or you think it's not quite right, this would be a way to raise that and perhaps get it corrected in the medical record. So it could play potentially an important part in increasing patient safety. In fact we’re already experimenting with this at Beth Israel Deaconess Medical Center, where patients can report questions about safety concerns, in a small pilot.

So how would this be different from just reading your medical notes and emailing your doctor?

Today, a lot of patients have the capability of emailing their doctors, nurses and others using secure messaging within provider portals. Patients are pretty careful about not emailing their clinicians unless they think it's really important. OurNotes will complement that capability, by enabling patients to almost keep a diary for themselves, of things to remind themselves about that are not urgent. Eventually, I think the lines between emailing the doctor and writing messages in the notes themselves may actually blur.

So what's the state of play of the new OurNotes project?

It will start as a small pilot at Beth Israel Deaconess Medical Center in Boston, at Geisinger Health System in rural Pennsylvania and at Harborview, a safety net hospital in Seattle, and also at Group Health in Seattle and Heartland Health in St. Joseph, Missouri.

We have different medical record systems and we will develop different approaches to inviting patients to contribute to these notes, and the intent is to see what works and what doesn't work. And then, hopefully, when we have learned about that we will undertake a larger study with a larger population.

In the bigger picture, would you say this is the shape of the future of medical records or patient engagement?

This is really the next stage of development for medical records, we think. Historically, clinicians have written notes and locked them up. In fairly recent history, patients have gotten permission to have copies, have access to those records, but it has been very much the province of clinicians to write and keep and document what's going on. But in order to take care of themselves, patients really need the information that is in those records. OurNotes will invite patients to be active rather than passive participants in care.

Readers, thoughts? Reactions?