Would you like to be a patient advocate who makes a difference in the treatments being developed for patients with serious diseases?
Researchers in government and universities are listening to patients’ perspectives regarding how to determine whether the likely benefits of a treatment outweigh the likely risks. That’s why we are holding several free workshops for individuals who want to be advocates for patients. The Workshops will train patients and family members by providing basic information about research used to study the benefits and risks of medical treatments, and how they can share their own views and perspectives in ways that will most benefit patients.
Many studies measure benefits that do not specifically improve patients’ health or quality of life, in an effort to shorten the time it takes to complete a study. For example, it is faster and less expensive to study whether a cancer drug shrinks tumors than to study whether that same drug helps a patient live longer or with better quality of life. Some patients might be fine with taking a chance on a drug that is not proven to help them live longer, because they have run out of options. Others only want to try a new drug if it is likely to help them live longer or with fewer side effects. Those kinds of patient perspectives are very important.
Improving patients’ lives involves listening and talking to patients. As you know, patients, researchers, doctors, and government officials don’t always speak the same language. And, patients aren’t aware of all the opportunities that exist to make their voices heard by those making decisions about important medical research.
Our first workshop will be held on Friday, Nov. 13 and Saturday, Nov 14, 2015. The 2-day workshop will be free, and meals will also be included. Hotel rooms and travel scholarships to Washington, DC will be available for those who live at least 50 miles away.
Anyone can apply, but we are especially interested in adults who have previously been involved in patient advocacy, either as an individual or while working for a nonprofit organization or government agency.
Please complete our preliminary application at ow.ly/RHD5H . And feel free to share with some of the other patients who are well enough to advocate for themselves and others.