Our next advocate in our Digestive Disease Week® (DDW) patient advocate series is Megan Starshak, co-founder of The Great Bowel Movement. Learn more about Megan, her patient advocacy journey and her ties with DDW below. You can also follow The Great Bowel Movement on Twitter, Facebook and Instagram. Be sure to check back for more advocate stories as we lead up to DDW 2017 in Chicago.
Q: Why did you become a patient advocate and how did you begin your advocacy platform?
A: I founded The Great Bowel Movement in 2010 with my non-profit business partner Andrea Meyer. The reason we started was actually quite simple – we had met at CCFA’s Camp Oasis (for kids with IBD) and wanted to find a way to help foster the moments of openness and connection that occur at camp. We came up with the idea of t-shirts that literally say “Ask Me About My Colitis” etc., giving any patient a way to invite a conversation, share their story, and contribute to a world with an increased understanding of exactly what we go through as patients living with these diseases. Our social media and blog efforts grew out of this – we began supporting people with showing ways to communicate effectively, better understand IBD, increase their own confidence and acceptance with their disease, and promoting the message of empowerment that every single patient has the ability to make a difference.
There is such a power in being able to look into a patient’s eyes and hear what their relationship with chronic disease is. All of a sudden, Crohn’s Disease or Ulcerative Colitis become a complex human being that is deeply affected, both physically and emotionally, instead of a list of symptoms they read on WebMD or heard about in a mass advertising campaign. All through the simple power of a shirt.
There’s a huge value to the patient as an individual, and a huge value to the collective voice of the community. Both are so important, and both can change the world, and we’re proud to be there to help build up patients in this manner.
Q: As a patient advocate, why is it important for you to attend DDW? How did you hear about it, and what prompted you to attend for your first time?
A: It is important for me to attend DDW to be able to get a snapshot of the research that’s happening in the GI field, as well as having the unique opportunity to meet medical professionals, ask questions that I otherwise wouldn’t have been able to ask, and learn more about progress in the area of IBD. I don’t come from a science background (my career is in marketing and design) and, while I think I have a good grasp on a lot of IBD, when I see the research up close I am reminded that there are a LOT of very smart, passionate, motivated people looking at the right things when it comes to advancing research. So for me, going to DDW is sort of both sides of this coin – I get to learn as much as I can, but I also see the reassurance of the incredible progress that is happening.
Q: What advice can you give to patients on how to follow along during DDW and stay/become more informed?
A: Patients can follow along through social media by tracking the official hashtag which will be used by a number of different attendees. Many doctors are active on Twitter, as it’s easier for them to tweet on the go or during a session. I think it’s a great way for patients to get information from the experts in the field. Many of the advocates post on social media too, which is a unique perspective to see things like ‘OK this is what’s happening, and this is what it means to us as patients…’ where as doctors and researchers don’t have that perspective. Having us as advocates in attendance is a great way to bring another layer of information to the community at large, especially as within the community, people are interested in a range of information and different levels of scientific detail.
Social media is a vital part of patient advocacy. It’s a unique way to reach the community in real time, and respond in real time, especially at an event like DDW where so much is happening and information is being presented so quickly! Our brand at The Great Bowel Movement is unique because it’s less about us, and more about the individuals who make up the community at large.