The Dish | New Participant Partners

The Dish | New Participant Partners


A lot of people will ask me about
participant-centeredness. What does this mean? It’s one of our fundamental values. How do we put
participants at the core of as many aspects of our program
as we possibly can? For me, this is very similar
to what Silicon Valley does with user-centered design. It’s not designed for people, it’s designed with people of those
who are going to be using it or partaking of the product. In this case,
a very large research program that’s going to have lots
of impact in the world. And we’ve been doing this
from the beginning. We’ve had participant voices and input in focus groups
and surveys before we ever got going
with the beta phase, doing user testing
and helping us get feedback and everything from
messaging to websites. All of our partners have a local
participant advisory board. So locally they’re being infused with different voices
and different perspectives. Even our IRB actually has
participants included in it to really help shape and make sure
that we’re doing things in the ethical and right way
going forward. But I’m really happy to announce
that we’re actually expanding the pool of participants who’ve
been through our protocol to join our governance more deeply. We’ve had four wonderful
volunteers from the beginning who have been really
bringing that participant voice, but they need help. We’ve got so much work to do and we’re adding 22 new people
to our governance. And this will be everything from participating on
the executive committee, our external advisory committee, our steering committee
which is really the nuts and bolts of the day-to-day
or week to week operations and decision making
that we’re doing. As well as all of the sort of
sub-groups and sub-tasks and sub-committees
working on everything from how do we include children
to what’s our plan for returning genetic information
to participants over time. So really appreciate
and thank you new participants who are joining this effort. We need your voice. We need your participation. There’ll be lots more
opportunities in the future to add even more participants
as we grow as a program to give everything from
feedback on. Coming soon are things
like mobile devices, and people using apps
and smartphones to provide data. So all of these are
opportunities for feedback, for planning and strategy,
and for helping us just co-invent the future of
the All of Us Research Program.

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