Help Wanted: Patient Voices Needed
Once is a blue moon an
event occurs that transforms your life into one with greater meaning and
satisfaction. This year I attended the
American Association for Cancer Research's
(AACR) Annual Meeting in San Diego. I was selected to be part of the
AACR's Scientist-Survivor Program (SSP). Attending this event was that life
changing experience. Before
arriving at the Scientist-Survivor Program I called myself an advocate, but I
really didn't have a clear understanding what that entailed. I know an advocate is someone
who supports a cause or idea.
Advocates speak out on issues that they care about and offer ways to
improve upon them. But the concept of advocacy was still confusing to me. When
someone would ask me to describe my advocacy work I didn’t know where to focus
my response. Many people are referred to as advocates, but they seem to be
doing a lot of different things. Why were they all called advocates? When I attended the opening session of the
SSP program a light bulb went on in my head.
I had that “Ah Ha” moment. A simple
graphic explained my confusion. There
are many different types of advocates.
From that simple graphic I learned that there were Support, Political,
Fundraising, Watchdog and Research. No wonder
I was so unclear.
At the opening session of the
SSP program Karen Russell Mills, the SSP program manager, asked the
participants to write down goals and hand them to her. During
the remainder of the opening session I intently listened as Carol Bass PhD, a
past SSP participant, Dr. Anna Barker and Amy Bulman from the National Cancer Institute’s
(NCI) Office of Advocacy Relations (OAR) explained the different roles of
advocates. From their presentations I
realized that I already was a support, fundraising and political advocate, but
the term research advocate was foreign to me. The wheels of my mind were
turning. What exactly is a research advocate and how can I become one? My goals were set. I handed Karen a slip of
paper that stated I wanted to discover all I could about research advocacy
during the AACR convention and to act on my learning after the annual meeting.
Many of the
other participants in the Scientist-Survivor Program were already research
advocates serving on IRB's (Institutional Review Boards), participating in
advisory boards, speaking on panel discussions at scientific meetings and
refining cancer research education materials. They were very willing to guide
me on how to become involved in this new avenue of advocacy. They told me about
training opportunities and helped me better understand the research process. Although
no one was a myeloma survivor like I am they graciously became my mentors.
Upon my
return from the AACR's Annual meeting I created a research advocate profile on
the NCI’s newly designed Office of Advocacy Relations (OAR) website. http://www.cancer.gov/aboutnci/organization/oar/become-advocate
But I felt I was at a
stand-still. I was in the NCI system, but I only would be contacted if they
needed a research advocate that matched my profile. I wanted to do more, but
wasn’t sure where to turn.
As luck
would have it a session on research advocacy was held at the International
Myeloma Foundation's (IMF) annual Support Group Leader's Summit which I
attended. My interest was sparked once again. The IMF research advocates presented
their work to the group and encouraged us to get involved. They suggested we start our advocacy efforts at
our locally. I took their advice and contacted my hospital. I asked if I could
observe one of their Institutional Review Board meetings. (IRB) They were very
accommodating and invited me to sit in on a session. After the meeting I wrote
a thank you note and asked how I could become involved as a patient advocate. In response to my question they invited me to begin
a training process that would ultimately lead to a spot as an unscientific, unaffiliated
member of the board.
I wouldn't have pursued the
area of research advocacy if I didn't attend the AACR's SSP. I networked with
inspiring and knowledgeable advocates while I was in San Diego. Although no one came from the myeloma
community, they all were very helpful in pointing me in the right direction. Many
seasoned advocates took me under their wing. The networking I was able to do
and the lasting friendships I made impacted me profoundly.
Why am I sharing this? Anyone
can become an advocate. You can be a
support advocate, a political advocate, a fundraising advocate or a research
advocate. Research advocates are needed because they bring the non-scientific viewpoint to the research
process and communicate the patient perspective. Research Advocates advise,
design, review and disseminate information. Research advocates are passionate
about making a difference for cancer patients. Advocates can help research
progress faster and furthering by sharing their insights and experiences. Providing the patient’s voice during
every step of the research continuum is vital. Research is what is saving my
life! If you are interested in research advocacy apply to be part of AACR’s
Scientist-Survivor program. You won’t regret it, I didn’t.
By Cynthia Chmielewski
@MyelomaTeacher on Twitter
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