What are they and why do we do it?
We help fund advocates to attend medical, education, scientific, research, and support meetings around the world. We want to gather information from the source, ask questions, and raise awareness of the patient/advocate perspective. When we first started, this was largely unknown, but now many organizations, government agencies, and groups have advocate participants on their review or even planning committees.
We often attend as Advocate Press because we list meetings in our Conference Announcement section, and then post our summaries online. We like to announce when there is a new summary. The summary is written by and in the style of the individual who attended, we don’t edit people’s observations, we appreciate them. Nowadays we can use Twitter @AnnieAppleseed or Facebook as well as our monthly e-newsletter to announce a new summary (opt-in if you want). We have some pretty terrific events covered as you can discover.
You will also find articles on issues that require the intervention of advocates. In the past 5 years, many articles have appeared in medical journals and newspapers indicating troubled areas. These include research, publication, funding, treatment, recruitment to clinical trials, and much more.
Ann Fonfa, president Annie Appleseed Project was asked to give the Patient Perspective at a meeting of the Guidelines International Network. Here’s what they say about themselves:
“Our mission is to lead, strengthen and support collaboration in guideline development, adaptation and implementation. As a major player on the global healthcare quality stage, G-I-N facilitates networking, promotes excellence and helps our members create high quality clinical practice guidelines that foster safe and effective patient care.
Our networking role is enhanced through annual conferences, region-specific communities and topic-specific working groups in which participants exchange knowledge and improve methodology. We welcome your participation in our vibrant community and are delighted to share, through this web portal, a wide variety of support tools and publications to enhance guideline development and knowledge transfer.”
We support the idea of evidence-based healthcare/medicine which consists of studies, patient experiences and preferences as well as physicians/healthcare professionals’ expertise. Together we find what works and why. Although most people we know who have cancer, are a lot more interested in what works rather than why. A perfect example of the disconnect and why patient advocate voices are needed everywhere. Be one of the advocates – contact us if you want to get involved – we know what groups are doing what work, and we’ll help you get connected.
Here’s a talk by Kelly Turner, PhD, from our 2012 West Palm Beach conference: