Posted by Bianca Siedlaczek on January 11, 2018
As the Patient Advisory Council says hello to 2018, we want to take time to reflect on all we accomplished in 2017. From new members to new toolkits, retreats to a redesigned logo – we have so much to celebrate!
The bigger the PAC, the bigger the imPACt!
In 2017, we onboarded 17 new members! While the PAC has doubled in size in the past couple years (woohoo!), our goal is for 25% of ICN Care Centers to have at least one PAC member. Currently, 18% of ICN Centers have an active PAC member. Here’s what a few of our new members have to say about beginning their journey with the PAC:
“I chose to join the PAC because I wanted to get more involved in the IBD community and help advocate for others with IBD. I also didn’t know anyone with IBD when I was first diagnosed, and I thought joining the PAC would be a good way to meet others with IBD and share our experiences.” - Sydney Ford, PAC member since April 2017
“The PAC has been a great reminder that I am not alone on this journey with Ulcerative Colitis.” - Taylor Hepner, PAC member since April 2017
“The stories of others have really inspired me to make a difference in the community around me. I have read almost all of the loops because i want to see and learn how others in PAC were living their lives with IBD.” - Luke Brighton, PAC member since May 2017
PAC members shared their voices, contributing 27 stories to LOOP – the official blog of ImproveCareNow.
These are our 2017 LOOP storytellers. Click the image to read PAC posts on LOOP!
We developed tools for others living with IBD, including a Medication Toolkit, which shares real patient experiences on medications used to treat IBD, and the IBD Story Book, which includes reflections from PAC members on specific impacts IBD has had on their lives including, education and mental health. Look for these tools to be shared widely in 2018. (TIP: you can sign up to be part of ImproveCareNow and get early access to tools we create.)
We grew our online communities, bringing together 207 followers on the PAC Facebook page and 626 followers on PAC Twitter. Our Instagram account has also grown with the help of all our new members and their generous sharing of pictures and stories.
“I like having our true, personal stories for everyone to see and witness what it’s like to have IBD. We connect with doctors, other patients from all ages, and their supporters from all over the world. We are linked through ImproveCareNow!” - Natalie Beck, Communications Co-Lead
We designed and launched a refreshed PAC Logo.
“When I came into the PAC in 2016, one of my goals was to update the logo and start branding more social media post, shirts, stickers, and more with the new logo. We as a PAC started brainstorming how can we convey, in one simple logo, what the PAC means to us. A looped chain shows how closely bonded we are as a council. We work together as a team to help pediatric IBD patients across the around the world receive the best care possible and ultimately reach remission. Since the release of our new logo, it has been used in the branding of our tools, creation of PAC shirts, bumper stickers, and more. This is only the beginning phase, wait till you see what we have in store for 2018!” - Christian Lawson, Communications Co-Lead
We led and participated in presentations at the Spring and Fall ImproveCareNow Community Conferences, covering topics varying from Transition and Mental Health, to Body Image and The Patient Community. Here’s what a few of our members had to say about their Community Conference experiences in 2017:
“The presence of patients at ICN Community Conferences allows the community to gain a patient’s perspective, in person. Patients are able to learn thinking from the clinician perspective, and clinicians are able to directly get patients input on their practices. When patients lead breakout sessions, the entire community is informed, in-depth, of what matters most to patients, which gives an insight as to what we should be working on to improve quality of life.” - Becky Woolf, Recruitment Co-Lead
“The best part about Community Conferences is being able to meet and learn from others within the community. It’s a great reminder for me, as a patient, to keep advocating because of the huge impact ImproveCareNow and the Patient Advisory Council has on pediatric IBD patients everywhere.” - Bianca Siedlaczek, PAC Co-Chair
In October, we held our first ever PAC Retreat in Cincinnati, Ohio. We spent a long weekend visiting hospitals and engaging in team building activities. Most of all, we enjoyed spending time together in-person. We visited a cider mill, had campfires, and explored downtown Cincinnati. Here’s what a few of our PAC members who attended PAC Retreat had to say:
“I learned a lot about Dayton Children's Hospital because I got to attend a tour and participate in a presentation there. I did not know much about it before or what they do but was glad to learn!” - Nicki Redmond, PAC Member since 2016
“The PAC retreat allowed me to connect with so many people I haven’t seen in a long while. I got a chance to meet some new people, chat with care providers at local centers in the area, sightseeing some of Ohio, and more. It was an amazing bonding experience, and it was so great to be around a supportive group of friends. I really enjoyed it, and I can’t wait to the next PAC retreat!” - Christian Lawson, Communications Co-lead
We created a new PAC Innovation Committee to review and organize PAC projects, which is led by Catalina Berenblum. The Innovation Committee plays a huge role in our organization and will streamline a majority of the structural operations of the PAC.
“In 2017, the Innovation Committee helped the PAC streamline their day to day functioning and evaluate how they were using their time. We hope that in 2018, the committee can continue to evaluate projects that will be helpful for pediatric IBD patients!” - Catalina Berenblum, Innovation Committee Chair
The PAC was very busy in 2017, working together to improve health & care for kids with IBD, through partnerships at our own local centers and as active members of the IBD Community; building lifelong friendships and supporting each other along the way. We accomplished a lot and had a lot of fun in 2017; we are looking forward to doing even more in 2018! If you’re interested in learning more about the PAC, joining us, and/or supporting the success of the council – you’ll find all the details you need in our recently published FAQ. If you’re on Twitter, please consider joining our January 2018 #PACchat, where we’ll be discussing Surgery & IBD – event details are available on the ImproveCareNow Website. Also, keep an eye out for new PAC tools coming soon, including: the IBD Storybook, Travel Toolkit, and Medication Toolkit – sign up to join ImproveCareNow so you don’t miss a thing!
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