The LRG is proud to announce that the inaugural class of our GIST Expert Patient Training Program has been completed. The class, which was open to GIST patients, caregivers, and other members oaf the extended GIST community, was comprised of just under 20 students and was a comprehensive offering designed to help participants better understand the science behind GIST. In so doing, they are enabled not only to learn more about their own disease, but to help other patients and caregivers in their journey as well. Graduates of this program are eligible, after receiving additional training, to serve as GIST Ambassadors and/or Patient Registry volunteers.
The course was delivered in an innovative fashion via cutting edge technology. Participants read preparatory materials each week that were provided via website, and then attended a weekly virtual class that was provided through interactive videoconferencing software that enabled participants to hear the lecturer’s voice, and also see materials such as slides and websites, via the instructor’s shared desktop. These classes, which were offered both in the morning and afternoon, were recorded, and participants were able to view them prior to taking online exams – both weekly ones on specific topics and a final comprehensive one in the last session. Both the video and tests were also delivered via website. The course was conducted over six weeks, and participants were expected to devote about 30 total hours to their training after completing an orientation phone call discussing what the course entailed and what their expectations were.
Topics covered in the class included Introduction to GIST, Basic GIST Biology and Mutations, Risk of Recurrence, Adjuvant Treatment, Treatments and Managing Side Effects, Radiology, and Clinical Trials. The class was truly a global one, with students logging on from the United States, Central America, Europe, and Africa.
“It really was a wonderful experience being able to pass this knowledge on to people so eager to learn” said Pete Knox, LRG’s Director of Strategic Planning and one of the course’s instructors. He added, “The students really put in a lot of work. They were asking challenging questions right from the beginning. I really think the knowledge they’ve gained is going to help them get a much better understanding of their disease, which can’t help but have a positive impact. They’ll also be in a position where they’re able to help others as well as themselves, so it’s definitely a win-win.”
Erin MacBean, who was one of the course’s participants, also added, “As a full-time patient advocate, I went into the Life Raft Group’s Expert 
Patient Training Course thinking I would be brushing up on material I already understood. However, I quickly realized the information and tools taught during the online classes were priceless. The classes focus on building knowledge and explaining the complexities of GIST in an easy-to-understand way. I highly recommend other patients and caregivers to sign up for the next session of classes. This, by far, is one of the best ways to learn more about GIST and give power back to patients and caregivers.”
The LRG intends to offer this class again in the near future, and will make everyone aware once a date has been announced, including explaining how you can participate if interested.
If you would like to learn more about the specifics of the course and how it is delivered, or have any additional questions, please send an email to Pete Knox at pknox@liferaftgroup.org.
