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Welcome to a unique place that poses better solutions for people with cancer.

Tuesday, January 17, 2012

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!

Friday, January 6, 2012

What does "patient advocacy" mean to you?


The term "patient advocacy" can mean many different things, depending on your frame of reference.  For instance, are you a person diagnosed with cancer, or a healthcare provider?

Most people get involved in patient advocacy for a specific reason, like having a loved one with cancer.  Everyone and every organization starts in one of the 5 categories listed in the puzzle pieces here.  This is their core reason for being involved, no matter how many things they do.

Many focus on direct patient support, while others work on fundraising events.  Still others get involved in political lobbying or enjoy "blowing the whistle" on the current establishment.  Some have found their calling by bringing the patient experience into research.

Very few of us have done all of these things and still live to tell the tale!

By the way (BTW), this site does NOT believe solely in “professional” patient advocates.  We believe that real people who have had real patient experiences are in a better position to represent the real issues and perspectives that real people have rather than rely on someone who studies theories in order to develop a career out of this (note to self – future article on this).

So stay tuned, help us stay real, and join in...