Posted by Tyler Moon on December 03, 2015
What is the Patient Advisory Council (PAC)? You may already know, but the PAC is a group of young patients with Crohn’s disease and ulcerative colitis (collectively known as Inflammatory Bowel Disease, or IBD) from across the country who are passionate about being IBD advocates and taking an active role in making care better for all children and youth with IBD. As a member of the PAC I get to work alongside many patients who are nothing short of incredible, inspiring people. We all have different stories of IBD battles and we all lead very different lives but we share two traits – we have IBD and we have a passion for making a difference. Our differences, combined with our passion, make us a powerfully unique group.
I’ve had the privilege of being a member of the PAC since its beginning, when we are led by Chair Jill Plevinsky. A lot has changed in four years thus far and today the PAC is taking on more responsibility than ever and becoming a stronger presence than ever before. Currently we have 17 active members. We stay connected and up-to-date on our work, despite the countless miles between us, by getting together on monthly conference calls.
The PAC has three task forces – Advocacy, Recruitment, and Communication. Each member of the PAC is assigned to a task force to focus our energy, but we’ve noticed that there is still a lot of crossover. I, myself, am the lead of the Recruitment Task Force, something I am very passionate about. We need new members so we can take on new projects that will help improve care for kids. Some of the projects we’ve worked on this year include: The Ostomy Toolkit and Project WOW! The more active PAC members we have, the greater our capacity for imPACt!
Recently, the PAC has been focusing a lot of energy on social media, as we have recognized it as the most powerful tool of communication and connection for our generation. Our Twitter and Instagram accounts serve to keep many in the loop, to connect with new patients and potential new members, and hopefully inspire patients and empower them.
Check us out on Twitter & Instagram: @ICNPatients
The PAC has also had a presence at the twice-yearly ICN Community Conferences (previously called Learning Sessions) but we are proud that the Fall 2015 Conference marked the largest patient presence at an ICN conference to date. We are excited about this achievement and hope to continue this representation, and even increase the number of patients at the Community Conferences. This brings me to one of the PAC’s current goals, one I have a large responsibility in helping achieve. We want to double our size – take on at least 17 new members within the next year. We welcomed a few new members this fall, which we are very excited about, and are hoping more will join us. Who can join? Patients with IBD who want to connect and work with other patients, parents, care providers and researchers to really make a difference. We have members in high school, college, and beyond (read: 20-somethings in medical school, graduate programs and even who have started their careers).
Are you interested in the PAC? Do you have questions for us? Do you have an idea for us? Get in touch! Email us at: firstname.lastname@example.org or connect on social media: @ICNPatients. We’d love to introduce ourselves and learn about you too. We welcome all IBD patients interested in getting involved and making a difference in IBD care!
Help us continue improving care, health and life for those of us living with IBD: Join us, Join the PAC and Make a Difference!