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Opening Up Expertise

Ernesto Ramirez
Jan 29, 2015 · 5 min read

OpenNotes to OpenResearch: An Idea in Four Acts


The Backstory

Earlier this week Susannah Fox, one of my guiding lights, was inspired by the snow day to expose some of her thinking around legitimacy and power as it related to her thinking about health and heathcare. And then, as is her typical course of action, she called upon the tribe to respond with their thoughts and ideas.

Dana Lewis spoke up:

Susannah responded:

And then I couldn’t help myself so I jumped in:


Even More Backstory

I’ve been thinking a lot recently about the OpenNotes project. For those of you who don’t know, it’s an amazing project based on the seemingly simple idea that patients should be able to easily access and read the notes their physicians and healthcare providers write in their medical records. There’s been a lot of great writing and research on the why it’s needed and how it actually works, but suffice to say it’s so far been a great success.

4.5 million patients have access to their clinician’s notes thanks to OpenNotes

I’ve seen two physicians in the last month for a skin issue I’m dealing with. This may sound a bit gross, but specificity is the soul of narrative so here it goes. A few months ago I developed a small wart on my scalp. Nothing major, just really annoying. So I decided to go see my primary care doctor to see if I could get it taken care of (and to make sure it wasn’t anything serious). The visit was fine until he sat down at the computer and began reading and typing before asking why I was there. It didn’t help my attitude when the first thing he asked me about (“How’s your back?) was wrong (I had previously gone in for knee and shoulder pain issues). After a quick conversation and exam he was back at the computer typing away. I really really wanted to know what was going on over there on the screen, but I was too nervous to ask.

Fast forward two weeks and I’m back for my appointment with the dermatologist. This physician was a bit more friendly and when she asked me about my job (“You mean like that thing my mom wears on her waist that she loves so much she calls me to tell me how many steps she has?”) I was able to shoe horn in an OpenNotes reference. That opened up a whole can of worms about whether or not patients should be able to read their medical records and how doctors might not be comfortable making certain notes when they know the patient can read it. But, that’s not what this piece is about.

What struck me as I read Dana’s response to Susannah was remembering what happened as my appointment was wrapping up (don’t worry, everything turned out fine). Noticing that I was curious about why I had a wart and what that meant, my doctor said that she’d print out something for me to take home. A print out is a start, but in the grand scheme of things, maybe it’s not the best way to deliver what could be important medical information.


The Idea

The New York Times lifted their pay wall so non-subscribers could follow their storm coverage. I love when legacy media companies are aware of the responsibility — and opportunity — embedded in moments of public need. How might we infect medical and scientific journals with the same sense of responsibility and opportunity?

This idea, from Susannah, of “infecting medical and scientific journals with responsibility and opportunity” resonated with me along side my experience at the doctor’s office because there is an obvious and worthwhile marriage to be made between the opening up of medical records to patients and the opening up of the vast amount of information and knowledge trapped in the research literature.

Let’s put our imagination hats on for a second and think this through. What would this marriage look like?

Monica is meeting with her primary care doctor and her new oncologist. She’s just been diagnosed with a rare form of cancer (take your pick). It’s scary and they’re talking so fast and using such big words that she’s having trouble keeping up. Thankfully she knows that her provider uses the OpenNotes system so no matter what she misses she’ll be able to review her records when she’s back home. When she’s back in the comfort of her house she fires up her laptop and logs in to review her records and notices something new, OpenResearch. She clicks “more info” and finds out that through a partnership between the hospital and the local university library she is able to access medical and scientific journals at no cost. Not only are they freely available, but they’re baking right into the system. Everytime she happens upon a new medical term, treatment option, or medication, she can highlight the text and automatically search PubMed for recent research, view articles, and download them to her computer or iPad for later reading. Maybe she is even able to access a pre-built set of articles that her care team has been reading lately, or maybe one’s they specifically recommend for her. While she’s never really read scientific journals, she dives in and begins to expand her understanding about herself and what she can expect as a new patient.


The Ask

Susannah has spent the better part of the last few years talking about peer-to-peer healthcare. In fact, you should pause right here and listen to this great podcast about the power of the internet for connecting patients featuring Susannah:

https://soundcloud.com/destinationdiy/health-care-hackers

One of the magic parts about peer-to-peer healthcare and the various groups, societies, conferences, and grassroots communities that focus on patient voices is how each person, each patient or caregiver, is given the opportunity to develop expertise, to be legitimate.

The above mentioned idea is an obvious “pie in the sky” story. There’s a lot to iron out here from a technical and business viewpoint, but I think the general concept is valid and could be revolutionary for patients as they grapple with their health and healthcare.

We have a long way to go on the road to developing a culture of health, a culture where everyone is empowered and given the tools and means to understand and learn about the medical hardships they face. I’m not going to say that the idea I’ve surfaced above (which again, would not have come about without Dana and Susannah’s smarts) is the answer, but maybe it’s a piece. Maybe it will help you think up something better. So I leave it to you:

How can we help create a culture of health where we all have the ability to be experts about our health?


Feel free to email me, reach out via twitter, or leave a response.

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    Ernesto Ramirez

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    Ernesto Ramirez
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