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Some cancer survivors
and others whose lives have been touched
by cancer become
cancer advocates. There are many ways
people can advocate on behalf of those
with cancer,
such as going with a loved one to a
doctor's appointment,
working to raise cancer awareness and
pushing
for legislation on behalf of cancer
survivors.
But research advocacy is a different
type of advocacy
where advocates work directly with
cancer researchers.
I think of it as being the patient voice
or the patient experience
in research. And so the point is to add urgency to research
and to add purpose, almost, and to make
sure that
the research is really focused on the
patient in the end
and that it really, in the end, will
impact patients in a positive way
whether patients live longer or live
better.
And so that's why I'm involved
in the research advocacy part, working
with researchers.
Research advocacy is a partnership
between researchers and
advocates and allows the patient
experience to inform the process of
cancer research.
Regardless of the research topic or area
of research,
research advocates are always bringing
the patient perspective to the forefront.
I really believe in research going
forward so we really need to train our
researchers to
communicate with the public. So I do
a lot of talking with
post-docs and graduate students about
how to talk
about their research to the public
in a way that they can understand. I do a
presentation on scientific jargon and
how to make things
simpler. And also in the realm
of research, a lot of the research
in this, kind of flows into--
when you start asking for funding for
your research,
you know, government funding is one thing
but also
organizations and non-profits also
fund research.
And so if you go for research grant at a
non-profit,
you might be asked to do a lay summary
or a public summary.
They need to be able to tell their
donors what their money is going to.
And also, a lot of times when you submit
grant applications to organizations,
advocates and patients do read those
applications,
and so if you are communicating with an
advocate while you're writing it, they
can help you write it in a way
that you can really get your point
across about the positive impact it
might have in patient lives and how you
can write that better.
Research advocates have played a key
role in the area of clinical trials,
helping to balance the science with
patient concerns and needs,
and ensuring that the issues that are
important to patients
are discussed and considered when
clinical trials
are developed and conducted.
So I also do a lot of research advocacy
in the area
of clinical trials.
And that's one of my focuses recently
because I really think that we can make
an impact as patient advocates in that
area,
to make sure that the questions being
asked are important to patients,
and that during the clinical trials what
we look at and what we measure
is what matters to patients. And so
I always say that when you do a
clinical trial it is to get the best
drug and the best treatment to patients,
to improve the lives of patients. They
need to live longer, or live better, or
both hopefully. But sometimes 
when clinical trials are developed, it's
such a scientific question type of thing
that you lose sight of what you're
really doing at the end.
So I work a lot with the researchers on
clinical trials
and looking at how they're set up and
how they can reduce the burden to the
patient, whether it's cost burden
or toxicity burden and
things like that. And also in getting the
patient voice into clinical trials
through
questionnaires and patient-reported
outcomes, so that you can hear directly
from the patient during the clinical
trial.
I think that's really really important,
because when you come to the end of the
clinical trial, it's really important to
have that information
so you can give that to the future
patients taking that that intervention.
To learn more about the role of a
research advocate, visit ASCO's patient
information website,
Cancer.Net.
One of the things about
advocacy and cancer in general, is
finding that place where you can find
reliable information.
And cancer advocacy and research
advocacy is not really
broadly known about, but ASCO's done a
really good job on Cancer.Net.
Whether it's through blog postings or
interviews with people, and
just reading up on it on the website,
you'll find a lot of information online.
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