The advent of inexpensive, high quality digital cameras enables patient advocates to interview top experts in an unedited fashion and ask questions that get to the heart of what’s on the patient’s mind as they deal with living with their medical condition on a daily basis and also seek long term solutions.
A case in point is the American Society of Hematology Meeting to be held December 4 - 7, 2010 in Orlando, Florida. The four-day meeting draws more than 21,000 people and is considered the premier annual education and scientific event in the field of hematology (blood disorders). Blood cancer survivors will be there as patient reporters, bringing “news” to fellow patients that no other media will cover.
Chronic Lymphocytic Leukemia (CLL) patient reporters will include two survivors - Andrew Schorr, founder of ]]> Patient Power ]]> and Gretchen Cover who manages the 3,000 member CLL list for the Association of Cancer Online Resources. Multiple Myeloma survivor Mike Katz will be there for the International Myeloma Foundation.
Schorr, a former medical journalist, says this is how it should be. “Patients want transparency and by being on the inside of medical conventions we are getting it. Yay!” He adds, “We are a new force to contend with. It is becoming less about doctor-to-doctor communication and more about patient-to-patient or expert-to-patient-to-patient.”
The ASH Conference includes top international speakers which attracts top international patient advocates whose participation enables cutting edge clinical information to go back to their home countries. To understand this, consider the rare blood cancer Chronic Myelogenous Leukemia (also known as Chronic Myelocytic Leukemia or CML) which makes up 0.3 per cent of all cancers. The 4,870 new cases expected in the U.S. this year seems like a small number until you learn that only 249 new cases are expected in Australia.