The Dish – Consortium Face-to-face Meeting (Video Diary #2)

The Dish – Consortium Face-to-face Meeting (Video Diary #2)


[ERIC DISHMAN]
Hey, it’s Eric Dishman here. I’m in Bethesda this week, lovely Maryland. It’s the middle of June somehow already. But I just wanted to give you
an update over the last week or so. The big news is, a hundred participants
have joined the All of Us Research Program. It’s a long way to go to a million, but
they’re giving us great feedback on bugs that need to be fixed, ways to sort of
present things in a better way—just incredibly, you know, appreciative of these hundred pioneers
suffering through a system that needs to improve and giving us great feedback do that. We’ve got Pittsburgh still starting to wrap
up its participants, as well as Henry Ford, and Detroit came on this week. So they’re starting small, and then
they grow bigger over time as well. So great to have them in the fold. Next week, there’ll be several that I’ll
talk about once it goes successfully. We had a consortium face to face, so over
a hundred people came from all over the country from our different partners—
academic, technology, marketing partners. And really, it’s—there’s nothing like
spending time together in spite of all the email and video conferencing we do with each other. And we really were focusing on, the first
day, getting a lot of the other sites who are ready to go to get really practical knowledge
from Pittsburgh and Henry Ford about the whole process they needed to go to say,
“Yep, you’re go for a beta watch.” And then the second day, we
really started looking at what’s next. We spent some time thinking about, OK, the tools
and the policies we need in place for researchers. And it was really great to have the perspective
of two of our participant representatives there, Carl Surkan and Steve Mikita. In fact, I shot some video dialogue with them
that we’ll share with you soon—just brought great narratives, great perspectives on what
they hope for the program and what motivates them to be here and then giving us advice
to out the entire week on the things that are—the two-day face-to-face. And with regards to researchers, we’re aiming
right now for launching what would be called our researcher portal probably
early/midsummer of next year, 2018. We need to collect a lot of data first and
then start building and testing out those tools, but there’s great progress. Many of them have already been prototyped
and experimenting with interfaces to make it incredibly easy for a wide range of researchers
to, at that point, be able to access de-identified electronic health record data—survey data as well. At that point, we should have a bunch of geographic
data that tells us things about where people have lived and be able to give
some of that information back to people. So I’ll give you an update next week—three
sites starting, fingers crossed that all goes well, but it’s early days—and continue
to look for your suggestions and your improvement.

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