Building Bridges of Trust: Why Community Relationships are Vital to the All of Us Research Program

Building Bridges of Trust: Why Community Relationships are Vital to the All of Us Research Program


Almost everywhere I go, I talk about the strategic objectives of
the All of Us Research Program and I wanted to focus
on the first one today. And that first strategic objective
is that we need to nurture relationships with people
from all walks of life as participant partners in
our program for decades. Now, if we’re going to
build that relationship, it’s got to be built upon
a premise of trust and that means starting out and
admitting in very open and candid ways that quite frankly, government-funded
research in the past has been used not to help people
but to actually harm people. Now, many federal laws have
been passed since then, research ethics capabilities in place, and there are a lot of checks
and balances to make sure that that never happens again. But we need to be open about that
and speak about that very candidly and directly with communities,
and invite people to ask challenging questions in candid
ways to really understand that we have truly learned
from the past and truly changed. The second way for really building that
trust and nurturing those relationships for me is just the general transparency
that we’re trying to do about everything from the program. That means posting our protocol online so people can understand it
and critique it. That means not just asking people
if you’re willing to share your electronic health record data
but really helping people understand what might be in there that you might be
a little nervous about sharing and coming into the program fully
informed about the risks. That means being transparent
with with the people about what are we doing to make
sure that their data is protected from a security
and privacy standpoint and being very open and transparent
should there ever be a breach of that information, and getting that out
to participants immediately. And then the third piece of this to me
about building and nurturing these real relationships is
not just preaching at participants but having participants involved
meaningfully in our entire governance and our entire process. At the end of the day, this is not,
you know, sort of at participants. This is by participants,
for participants. And that’s a key principle of
our program, and I think we’re living that out every
single day of the program.

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