When "patient advocacy" or "patient
advocate" is used here, it applies to the work done by grassroots patient
advocates who slog through the research community to help create better, faster
answers for people. Well, that’s what we
strive toward anyway…
This kind of patient advocacy can include grant reviews (how
research is funded, e.g. money, survival), but usually focuses on the work
after researchers receive their funding (more
on that soon).
This is very different than other forms of patient advocacy (see
“What does patient advocacy mean to you?).
Patient advocacy in research requires long-term commitment,
self-education, problem-solving, and a partnership approach with the research
community that often goes unrecognized.
NOTE: we sometimes befriend researchers, but this is NOT who
we advocate for! There can be rewards,
but don't expect the instant gratification that other forms of patient advocacy
reach with regularity.
Our motto: it’s about patients, not researchers or
ourselves.
We focus research on results for people and
how patient advocates can, have, and will continue to make a difference. A few of us have realized, however, that
trying to improve the existing system is fraught with frustrations.
While we’ve made progress, it isn’t enough. Even though we’re everywhere, now that it’s
fashionable and politically correct to include “patient advocates,” we didn’t
get involved in this quest just to be busy.
We want to accomplish things and move on to real lives that
don’t have to worry about cancer. It is
time to get back to what we do best – bring patient voices into research and
solve barriers to results for people.
This means constantly ‘stepping out of the box’ (e.g.
system, establishment, same-old/same-old, powers that be) and fostering
alternative approaches that bring innovators together in whole new ways.
So stay tuned and join us!
