Posted by Alex Jofriet on August 09, 2016
PAC co-chairs, Bianca and Alex, are on the blog today to recap some of the amazing things this group of patient advocates has accomplished this summer. The PAC was created in 2011 with the intent to bring IBD patient advocates together to change IBD care for and with the ImproveCareNow Network. Over the years the PAC has evolved and grown and we've highlighted this in our new timeline. This summer the PAC made strides towards becoming a bigger, more engaged and effective council and we're excited to share how we're doing it and what it means for the future.
When you’re handed a diagnosis of Crohn's disease or ulcerative colitis, or any diagnosis for that matter, you feel like a needle in the haystack; dominated by questions and uncertainty that cloud over everything. It can be hard to look towards the next day let alone a week into the future. It's natural to want to plan the future to gain control over life’s uncertainties, but in that moment of diagnosis, all you can do is silently watch as that grand ole plan leaves you in the dust. It takes a lot of time to come to terms with the lack of control a diagnosis can bring, but if you can find activities that allow you to exert more control over your disease journey, it makes life easier.
One of the activities we have found is the ImproveCareNow Patient Advisory Council. We love the PAC! We love it for the amazing kids we have had the privilege to work with and for the fact that what we do is going to be integrated into patient care nationally and internationally. We can talk about the PAC until we’re blue in the face, but today we are going to let the work the PAC has accomplished this summer do the talking for us.
During the Fall 2015 Community Conference, the PAC created Instagram and Twitter accounts (@ICNPatients). The initial purpose of this was to give non-members a feel for who we are and what we do. Over time, it has turned into something much more than that. Through social media, the PAC is able to share current projects, raise awareness, and highlight our members biography “trading” cards. We are working to keep the momentum going by increasing our number of posts per week, which we think is why we've been joined by 80 new followers this summer alone!!
The PAC has started working on a toolkit to aid patients transitioning between medications. Many times materials provided to patients during this transition only include medical information: how it works, side effects, etc. While this information is important and helpful, kids want and need answers to questions like: does it hurt to take; is it going to affect my sports or school routines; and are the side effects manageable. Patients want to know what the experience is like. So the PAC has compiled medication experience stories to add another dimension to medication transition. Sometimes it can feel like you're the only one on a certain medication. So each medication experience story is paired with a picture of the storyteller to help other patients know the experiences are coming from people just like them. We are excited to get this toolkit completed, to begin sharing it and see the impact it has.
Since the start of summer the PAC has welcomed seven new members. That means our Recruitment Task Force has already met their 90 day goal of 4-5 new members and are on their way to achieving their 180 day goal of 8-10 new PAC members. Each of our new members are very enthusiastic about being involved. New member, Christian Lawson, has big plans for video projects for the PAC that we hope to start working on soon! Natalie Beck has taken over leadership of our Communications Task Force - in her first week as a member. Everyone has something to offer so make sure to stay in the LOOP with PAC posts because we'll be introducing our new members soon! We're very excited to welcome so many new members to our council!
To help new members become ICN/PAC-pros and to learn more about the PAC, we have started to develop a Welcome PACket (yes, pun very much intended)! The PACket outlines our PAC structure, past projects, and even includes a PAC directory. The directory is intended to help new members put names to faces, so we can all stay connected across the miles. We hope to unveil a standard Welcome PACket at the Fall 2016 Community Conference in September!
The PAC is currently outlining the production and roll-out of a video series to improve awareness of IBD and how it affects the pediatric population. The project will draw on the skills of new member, Christian Lawson, who brings video experience and energy to spread awareness about IBD to the PAC. The videos will span a variety of topics highlighting the IBD experience from diagnosis to remission, but also informing viewers about the PAC and ICN and the benefits of involvement.
A lot of big projects have been worked on this summer, but there have also been some small, miscellaneous projects that deserve to be highlighted as well. The PAC published its first ever infographic, which summarizes what the PAC is, what we do, and who we are - it was pretty successful on social media and LOOP. We also submitted proposals for three breakout sessions at the Fall 2016 Community Conference and are excited to be bringing a diverse group of PAC members to the conference! Patients will also be presenting during the plenary (full group) session for the first time at this conference. We have been blessed with amazing attendance on PAC monthly calls this summer with a record 16 members in attendance for our July call. Our calls are going to get even better come August with a member-highlight during each call. Because the PAC values each of its members, we decided to designate a time during monthly calls to highlight the amazing accomplishments of our members while also giving other members a time to get to know their PAC colleagues.
We hope you've enjoyed our summer recap and that now you know a lot more about the PAC’s scope of work, our members, projects and purpose. The PAC strives to make a difference by improving pediatric IBD outcomes through meaningful projects while fostering a culture that supports and values each of our patient advocates. If you liked what you read and are an IBD patient 14+ we want you to join us! Send us an email at [email protected] or let us know your interested on the ImproveCareNow website!