Patient Advocates Wanted!
Researchers in government and at universities are listening to patients’ perspectives on the risks and benefits of treatments. They need to hear from patients like you! 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 to understand research that evaluates the safety and effectiveness of treatments and prevention strategies, and teach them about opportunities to share their own views and perspectives in ways that will most benefit patients.
Most patient advocates help a small number of individual patients. Our goal is different. Our workshops and training are designed to help patient advocates get the information, skills, ad confidence they would need to help patients on a national level by influencing the development and evaluation of treatments used by patients across the country.
You might be surprised to learn that many studies of new treatments measure changes that do not necessarily improve patients’ health or quality of life. 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 have a 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 have fewer side effects. Those kinds of patient perspectives are very important to researchers and to health professionals, and we will help patients have the expertise they need to share their views with researchers and opinion leaders.
Our next workshop will be held on Friday October 14 and Saturday October 15, 2016. 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 40 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 as a member, volunteer, or staff for a nonprofit organization or government agency.
Please complete our application at http://goo.gl/forms/CxFrg61Qk15pxvyw1. Preference will be given to applications received by July 31, 2016. And feel free to share with other patients who are well enough to advocate for themselves and others.
Make your voice heard!
Find out more about this year’s Patient Advocacy Workshop HERE.
Patient advocate Diana Levine discusses her experiences, at the June 12, 2014 Workshop