At the Spring ICN Community Conference, PAC members led breakout sessions on the important topics of self-advocacy and pediatric-to-adult transition. In this episode of the imPACt podcast we continue the conversation about these topics with special guest, and PAC alumna, Sami Kennedy. 

LOOP is making an impression on the IBD community! In 2017 LOOP was recognized twice as a top blog for Crohn’s disease – 19 of 100 by Feedspot and Top 10 by Medical News Today! This is a direct result of the variety and quality of stories and perspectives shared by so many members of the ImproveCareNow community!

In 2017, 50 posts were published by 36 ICN community members! And 18 people posted for the very first time during the year. Posts covered topics like: IBD research, new PAC member intros, ICN event updates, what I wish you knew, and many open & honest accounts of life with IBD.

We are thankful for each and every one of these stories. Here are the top 10, most viewed, LOOP posts of 2017!

When I first started running in elementary school, I ran a bit like an ostrich: neck out, arms flailing. My legs were incredibly adept at kicking my butt; let's call that a sign of things to come? I laugh now, but I really took it in stride then. I had a mantra: If you can't be first, be last.

My friend is sick. She has been for a few months now, though we've only recently started talking about it. She has pain that leaves her crunched over her legs, nausea that sours her food, and a troubling relationship with toilets. Familiar, right? But here's the catch: she doesn't have IBD.

I was honored to be invited to talk about my joint experience as a young adult with IBD and medical student at the American Academy of Pediatrics National Conference and Exhibition in San Francisco. Guided by the philosophy of ImproveCareNow (I am a former co-chair of the Patient Advisory Council), I emphasized the necessity of patient and parent partnerships, as well as the value of mentorship and representation of disability in medical education. I invite you to watch my talk:

Early in my medical school experience, a classmate and I discovered we had both been navigating the wild waters of med school with our own separate but similar chronic diseases, silently, without realizing the other was paddling and advocating for change right alongside us. You really never outgrow of the need for mentorship and support; one of the many myths of the pediatric-adult care transition.

We teamed up, connected with another classmate with experience and skill of her own, and founded the Disability Awareness Association to raise awareness and advocate for ourselves, our colleagues, and our future patients with disabilities. We asked ourselves a question: How can we spark discussion in our medical education about life with a disability beyond what our textbooks say?

I am just over three months into my first year of medical school. I love it, really, I do. Every day is different and a new kind of challenge, causing me to both embrace and restrict change as I become and remember who I am.

Of course, one contributing factor to who I am is my ulcerative colitis. It rarely feels like a Disease, with a capital D. It is less of a dinosaur than a dandelion these days. Usually barely noticeable but ubiquitous in my fields of thought. But then, the slightest trigger of an associated idea or memory creates a flurry of emotion I can’t help but acknowledge.

Outgoing Patient Advisory Council (PAC) Co-Chairs - Jennie David and Sami Kennedy, who co-wrote "What We Wish Our Parents Knew" - have announced their successors! Alex Jofriet, who is committed to turning his Crohn's diagnosis into a light for others to follow and Bianca Siedlaczek, who is excited to continue her patient advocacy career with ImproveCareNow. Keep reading for personal introductions from the new PAC co-chairs!

Meet Alex Jofriet!

Hi, my name is Alex. I was diagnosed with Crohn’s Disease at age nine. It took many years, about eight after diagnosis, for me to find remission. At diagnosis, I was one of those shy, studious kids who sat in the classroom, mostly invisible to my peers and I liked that. My diagnosis of Crohn’s Disease threatened that invisibility and it took me about five years to accept my disease and open up about what I was going through.

Now, looking back, that seems like long forgotten history as I have gone from wanting to be invisible to being involved in many advocacy endeavors. My involvement in advocacy led me to ImproveCareNow (ICN), which I have been involved in for the past 4 years. What has kept me involved with ICN is their focus on the whole IBD patient. As co-chair, I hope to add to this "whole patient" focus by increasing the amount of peer support for patients in the network through a universal mentoring system. I am appreciative of all ICN has done and continues to do and am super excited to get started!

Meet Bianca Siedlaczek!

Hi, my name is Bianca! I was diagnosed with Crohn's Disease about 7 years ago, when I was 9 years old. In the past 7 years, I have been through many hospitalizations, many flares, one surgery, one year of remission, and much more. Every one of my experiences with Crohn’s Disease, through the years, has facilitated the growth of my passion for being a patient advocate. Over the past year and a half, ImproveCareNow has given me the chance to fulfill my passion for being an advocate. From the beginning, when I came to my first Learning Session with my center in Michigan, I  loved what ICN was doing to improve patient care and how the network went about doing so.

I look forward to transitioning from being a patient scholar to becoming one of the Patient Advisory Council’s Co-chairs. I am beyond excited to take this next step in my “advocacy career.” I cannot wait to continue working alongside the many centers involved with ICN and ICN’s staff. To say the least I am very excited to get started!

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The Patient Advisory Council (PAC) brings together patient advocates in ImproveCareNow as partners to create a network for pediatric IBD patient engagement. They create, co-create, and advise the creation of innovations to facilitate improvement in pediatric IBD care and quality of life for children and young adults living with IBD. The PAC welcomes passionate young adult patients (14 years and older) to join. To learn more or join please email [email protected]

Samantha Kennedy - outgoing Patient Advisory Council ("Pack") Co-Chair - is heading off to medical school in the Fall. In an inspirational message to Community Conference attendees - and indeed the whole ImproveCareNow Community - she thanks everyone for working within ImproveCareNow and for believing we can make a difference together. And she reminds us that our work (with patients specifically, and in general) may not be easy or quick or tidy, but 'it is the future, and we need to be the same sort of brave you ask patients to be as we pave that road.'

Sami's words are inspiration on-tap. Enjoy!

This is not a goodbye.

Yes, I will be a student at Cooper Medical School in the fall. Yes, Jennie and I are transitioning the Patient Advisory Council into the hands of wiser, brighter, and as it so happens, younger colleagues. Yet, this is not a goodbye. I have little doubt you will agree: once you are a part of ImproveCareNow, you are always part of ImproveCareNow. As I enter medical school, I question how I can best serve as both a patient advocate and a medical student. I know only this for certain: I cannot imagine practicing in a system without ImproveCareNow and similar networks I hope will be just as successful for other conditions. We are not only creating health for kids with inflammatory bowel diseases; this is making the whole system healthier.

By name, we are a curriculum. We are a learning health network, a network – learning – together. I think it is easy to forget what that means - that we’re all students. If I have been brought up through the education system correctly, as I hope I have as a soon-to-be-graduating senior, being a student is not about getting everything right every time. Students try. Students revise. Students experience. Students have open and engaged minds that recognize success not as a thing but as a method. We are students. We are a learning health network.

When I first started co-chairing the PAC, I really strongly believed we needed to build a model framework for the engagement of patients in a learning health network. Jennie and I took the PAC and restructured it into task forces. We are distributing leadership. We are increasing intra-PAC participation. We are concentrating our resources on developing sustainable task forces, on developing leaders. We are increasing our collaboration with your care centers throughout the network, finding ways we can help each other. We are trying to foster and amplify the voices of not only PAC members, but patients throughout the network. We are establishing a project management structure. We are clarifying guidelines for what active membership means. We are piloting a recruitment program. We are PDSA-ing what ideal patient engagement here at Community Conferences should resemble.

I do not like how those sentences begin. “We are” as a phrase signifies something that is ongoing, not something that is done. As students, researchers, and leaders, we like progress and conclusions. It can feel to me that some of the work we are engaging in is continuing indefinitely.

In our case, however, “we are” is a phrase of success. We are lasting. We are continuing. We are making changes, which lead to other changes, hence prompting more changes.
We are changing the paradigm. In 2013, the Patient Advisory Council was a Facebook group. Today, we are present on multiple network-wide communication platforms and building a presence within care centers. In 2013, we were trying to fit into interventions, to carve out corners and spaces and places we could fit. Today, we are co-creating our own innovations; you are allowing us to co-create yours because you see the value in that. We are challenging the paradigm of how patients and clinicians should interact. In 2013, patients and parents were a minority here. Today, we are here in force. We are fifteen patients. Fifty percent of the PAC is here this weekend. That has never happened before. In 2013, we were acquaintances, colleagues. Today, I call many of you friends and mentors - we talk about mentoring so often here just in the peer-to-peer patient sense, and that is a huge deal, but we are a community of mentors. I don’t know if we recognize that explicitly enough. We are learning in a network, we are learning not only from each other but with each other.

Very rarely will our work end with a hard stop, but that would be the wrong measure by which to judge ourselves and our success. A hard stop would only indicate failure, that we have stopped approaching barriers creatively and stopped challenging ourselves, so that we can go no further. To be a learning health network, I believe we are held to the same standards as all ideal students. We try and we do not give up, even when we want to, even when our work feels tedious, even when we feel as if we are is not enough, even when we feel as if we are achieving little. If we measure ourselves by growth and not an endpoint, we see ourselves as a community in a clearer light.

We are ImproveCareNow. I am ImproveCareNow, and I am really enthusiastically proud of that. I cannot wait to carry that to Cooper with me and beyond and see where it takes all of us. Thank you for working within ImproveCareNow, and for believing that we make a difference together. Please go home and believe in your own patients and believe they can help you go further. It may not be easy or quick or tidy - like some of us really like - but it is the future, and we need to be the same sort of brave you ask patients to be as we pave that road.

If we stop believing patients and families matter in care, our magic as a collaborative will be lost. We celebrate our successes not because failures do not happen, but because when we keep trying and trying and trying, we succeed. It may feel like magic, but it is we are just people – believing –together.

A record seven gutsy patient advocates in ICN's Patient Advisory Council - PAC, "pack" - attended the Community Conference. We tweeted live at #ICNCC15s all the way through - so please check out our feed!!

The Patient Voice is already strong on Twitter. For a week leading up to the conference, Alex, Bianca, Christian, Isabelle, Jennie, Randa, and I tweeted once a day to provide a glimpse into how IBD factors (or does not factor, in some cases) into our days. We made special reference to the key drivers of remission took center stage at the Community Conference and form the foundation of ImproveCareNow's work:





Jennie described challenges that impede her access to and communication with her doctor.

Randa described how proactive care allowed her to take better control of her ulcerative colitis.

Alex questioned why it can be so hard to find the right medication - and shared his optimism that more accurate diagnoses and research can change the game!



Bianca shared how less-than-optimal nutritional intake has impacted her - and made it difficult for her to grow at the same rate as her peers.

Isabelle emphasized the relevance of compassionate care to psychosocial health.

Finally, Christian described how a food journal has improved his ability to self-manage his IBD.

And, I shared how my pill case makes it easier for me to stay adherent at college and on-the-go!

We hope you'll join the conversation on Twitter now and in the future!

 

My name is Christian Hanson and I am a sophomore at Brown University. I was diagnosed with Crohn’s disease at age ten and receive Remicade infusions at Boys Town Medical Center in Omaha, Nebraska. While Crohn’s so often feels like a heavy burden, there have been fleeting moments where my condition feels more like a blessing: Through this disease I have discovered a network of heroes who have overcome the trials of IBD and have been surrounded by a caring and compassionate network that spans the United States. I am joining the Patient Advocacy Council because I believe in their mission to magnify the voices of patients and advocate for those who cannot. I will be helping share, via CIRCLE eNewsletter, updates about the PAC and various projects related to patient engagement active throughout the ImproveCareNow Network. Feel free to contact me at [email protected] if you would like to learn more about the PAC or would like to speak with me regarding my personal experiences.

All the best,
Christian Hanson