What "patient advocacy" means to us

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!