On September 28th, I had the pleasure of giving a remote presentation for the Ottawa GIST Day of Learning (GDOL) hosted by the Life Raft Group Canada. The event was well attended, with over 40 attendees and speakers from throughout Canada, such as the relatively local areas of Ontario, and Quebec, but also from as far away as British Columbia, New Brunswick, and even Nunavut, as well as New York and Massachusetts.
My topic was “SideEQ…The next step on the road to personalized side effect management.” The presentation focused on two related things that remain important to optimizing patient outcomes. First, the existence of SideEQ, which provides a venue for patients and caregivers to record and rate side effects and the impact on quality of life; it also provides members with the option to view and post tips on managing those side effects. The Life Raft Group believes that doing this successfully will help patients stay on their medication longer, thus contributing to better outcomes, such as increased progression free survival and overall survival. Data presented included the impact of side effects on compliance, how side effects may vary by gender, and the international scope of the users in SideEQ. Especially well received was the fact that, when looking at users outside of the U.S., Canada had the highest number of participants in SideEQ. (https://mysideeq.org)
In addition, I spoke about how side effects and their management should be personalized, as side effects vary by individual. When you read the prescribing information for a medication, you’ll notice a number of side effects are often listed, but we know through the data collected via platforms like our Patient Registry that not every patient experiences every side effect, and even when multiple patients have the same side effect, intensity and/or duration can vary.
Finding out what contributes to the variation of side effects is one of the main reasons the LRG introduced SideEQ. It enables us to collect data to understand what contributes to the variations, and then to provide this information to physicians, researchers, and patients so they can better understand what side effects may occur on an individual level. For a more in depth description of personalized side effect management and the role SideEQ can play, please read an article we published a few months ago, available on our website at https://liferaftgroup.org/2019/06/stepping-into-personalized-side-effect-management-with-sideeq/.
Overall, the presentation was well received, with attendees remarking that it was “interesting,” “useful,” and that SideEQ seemed like a “great platform for sharing info.”
My thanks to Malcolm Sutherland and David Josephy of LRG Canada for arranging the event and inviting my participation. Thank you also to the attendees for listening and participating, and to all of the users of SideEQ that have supplied their data and made these analyses possible.
Please visit GIST Sarcoma Life Raft Group Canada to view presentations from the GDOL: https://liferaftgroup.ca/join-us-at-the-ottawa-gist-day-of-learning/.