discussing open.epic

open_epic.markdown

http://open.epic.com/

They invite people to email.

open_epic_com_1.md

RE http://open.epic.com/

In your cartoon the patient seems unimportant, even though the patient is responsible for making changes.

How can the patient collaborate with the doctor without having the same view of the problem? How many of the decisions in the story in your cartoon leading to the patient's success were made and carried out by the clinic?

-bewest https://github.com/bewest

open_epic_com_2.md

response from epic

Hi Ben – thanks for your comment. You raise a very good point, and I’ll do my best to answer it.

First, I agree that obviously, Louise (and her caretakers’) view will be perhaps the most important of all. This is implied when she logs into her MyChart account – that she’s already managing her health through there, but it’s not explicit.

However, unlike Dr. D., Louise already has access to personal monitoring information. She’s got her Bikestagood account, she’s got the omnomnom.com account, etc. What’s novel (or what we hope is novel) is that she’ll now be able to open this data to inform the EMR, and the cartoon was meant to illustrate some of the ways in which that data, now present in an EMR where it wasn’t before, could be used.

I agree, however, that we left out one really important part – sure, Louise had access to all this data already, but in the past, it was kept in separate containers. So she couldn’t see how her diet choices affected her blood sugar, or if biking affected her appetite. And now, with integration of this data into the EMR, we’ve also integrated this personal monitoring data with itself, and that unlocks some pretty great opportunities to form a cohesive clinical picture and make some connections that weren’t there before.

Thanks for your feedback, and I hope I’ve explained our vision better. Does that sound more in line with what you were thinking?

open_epic_com_3.md

Thanks for your elegant response. I'd like to share it with other engaged patients, if that's ok.

I have type 1 diabetes personally... I would argue I have very little access to data, since the the vendors are allowed to control how and when and where data from the device goes, and I'm forced to buy the device or go without therapy.

I think the Open Epic project is great, I would suggest focusing on the phrase "single pane of glass" to emphasize that you are attempting to solve a communication problem, and that now the doctor and the patient can share the same view of the problem. (We used this phrase all the time at Meraki.)

What the web does well is allow people to share the same exact view of problems, which lowers the overhead to communicating material. From this perspective, the Open Epic project looks great -- I would love a way to increase the fidelity of my care simply by having better tools to communicate important things with my doctor.

However, what concerns me is that my patient records or like a book I've authored or a piece of music I've composed: they have value to me in the future, and outside of today's primitive technology. It's not clear to me that once Open Epic has assembled the data that the patient is able review/amend details with as much authority as I believe they should. What happens in 15 - 20 years when the world is a different place? Will the patient still own and modify their records, or will it depend on the personal effort they spend now to back everything up somewhere outside a vendor's control? Businesses go out of business, doctors retire, patients switch doctors, etc... What happens in 100 years? Will researchers have access to portions of my records I've authorized?

-bewest