When Jennie and I applied to represent the Patient Advisory Council for ImproveCareNow as PAC Scholars in 2012, we were asked to each write an essay on our expectations and goals. I read mine over in December before I jumped on a plane to Orlando - more on that later.

I wrote in my essay, way back in 2012, a list of promises I would keep if I could just please go to a Learning Session. Paramount on that list was this: "I will listen more than I will speak." Because that's what patients do, right? I had the distinct feeling that I would be an intruder in a place where patients don't belong - and let me be clear that no one in ImproveCareNow made me feel this way; my stereotyped idea of what it meant to be a patient did.

"I will listen more than I will speak." This was my perception: it was okay for patients to sit at the table. To sit, to listen, but to speak? How could I? I was nineteen. I was a patient. What could I possibly have to share?

There is a time for listening, absolutely. But there is also a time for speaking - for all to speak. I had no concept of that as a young patient. I couldn't imagine myself having any sort of expertise that would help improve the healthcare system, even as I navigated it constantly. I figured I'd be there as an observer, to bring back insights to share with other patients about ImproveCareNow's work to help kids recover from, and more so, avoid flares of their IBD. Observer is the word I would have chosen to describe my responsibilities there.

PAC Co-Chairs, then PAC Scholars, Jennie David (left) and Sami Kennedy (right) at their first ImproveCareNow Learning Session, October 2012.

Since my first Learning Session in the fall of 2012, I have been to five more. At each of them I have listened with a tape recorder running in my mind every second of every day, but I have also come home with a hoarse voice. Observer? No. I am so much more. No one at the Learning Session is just an observer - whether a long-time veteran or a special guest. Look at the buzz generated on Twitter (while you're at it, check out #icncc15s!) if you don't believe me.

I love to tell the story from my second Learning Session. To give you some context I am still nineteen here, and I've never before presented anything, anywhere, outside of a classroom. I was involved in a Q&A after a presentation I co-led with a physician and psychologist on medication adherence. A psychologist, physician, and patient together giving a presentation - I couldn't have imagined that just six months earlier! A physician in the audience posed a question to me regarding how I felt adherence could be effectively encouraged in patients my age. I gave my best answer, and he responded with his opinion based on his experiences, which happened not to be congruent with mine. We conversed for a few minutes; others chimed in. It was fascinating, thrilling, magical; I don't know if I can point to a better real-life definition of active collaboration.

After the session, this same physician hurried up to me at the podium. "I'm sorry," he said.

Wait, he said what?!

"I'm sorry," he said.

I asked him to clarify, very confused, and he explained that he worried he had made me uncomfortable by challenging my opinion as a patient. In fact, he had done just the opposite. This was my ImproveCareNow "lightbulb" moment.

Sami (left) with former PAC Chair Jill (right) and ImproveCareNow project coordinator Molly (center) at the Spring 2013 Learning Session.

I have been asked countless times: how did you become who you are, a young patient leader? How do we get our patients to be like you? I am not sure this is the question we should be asking - because it assumes I am extraordinary. I know I am different; I have done things few other patients my age have - but it is not me that is extraordinary. I have been welcomed into an environment where I am encouraged to not only sit at the table, but also to stand up and address the whole room.

ImproveCareNow is an extraordinary community - a community with an ever-growing number of parents and patients being handed the mic - being asked to do things that were never before possible. This physician hadn't made me uncomfortable, no, not at all - he had made me comfortable. Our conversation erased all doubt from my mind that I was there for show; I was there for the same reason as him.

I wish I could convey to you how incredible that felt - and how sad I feel in retrospect that feeling included, truly included, had to feel incredible because it was so unusual.

I told that very story twice in 2014 to two very amazing audiences - first, to executives from the Robert Wood Johnson Foundation and, second, to healthcare leaders and learners at the Institute for Healthcare Improvement National Forum - the reason I took that flight to Orlando. I presented the Patient Advisory Council to each and, in each case, asked them to imagine collaborating with patients. I told them about the promise I made before my very first Learning Session, and how I have broken it over and over again.

Sami presenting the PAC at the Institute for Healthcare Improvement National Forum in December 2014.

There is a time for listening, and there is a time for speaking. For all to speak, and all to listen.

I found out in the fall I've been accepted to medical school, and I'm still trying to figure out what it will mean for me to be both a patient advocate and a medical student. But here is what I do know: I can't really imagine myself practicing in a system without ImproveCareNow and networks like it that I hope will be just as successful for other conditions. I want to be a physician who makes my younger self proud. One who doesn't just repair broken things, but creates things that are better. One who is brave enough to say and show that everyone has expertise, taking patient and family engagement to the places ImproveCareNow has, where it can be frightening to go. I see networks following in the footsteps of ImproveCareNow as the foundation of how I hope to practice - and how I have to practice. This is not only creating health for kids with IBD; this is making the whole system healthier.

Of course I am scared as I figure out a new set of expectations - but, this time, I don't expect to be silent.

It seems like just yesterday the Spring Learning Session was around the corner! We're just FOURTEEN DAYS away from the 2014 Fall Learning Session - can you believe it!? As usual, the Patient Advisory Council (PAC) is excited, thankful, and busy preparing for the opportunity to contribute to the LS. Once again, the PAC Leadership is gearing up for busy and productive collaborations and presentations, and this time, we get to personally introduce two new PAC Scholars - Isabelle Linguiti and Bianca Siedlaczek!

14 days to go, 3 incredible days in Chicago, 2 amazing new PAC Scholars, and 1 fantastic session. Are you not excited yet!?

PAC representatives showing off their gutsy spirit at the Spring 2014 Learning Session!

Just in case you aren't bursting with gutsy energy yet, we wanted to give you a preview of what to expect from our two new Scholars. These young ladies are intelligent, creative, passionate, and spunky. We asked them to tell us (and YOU!) a little bit about themselves and their ideas:

Isabelle, 19, Philadelphia

"I’ve been frustrated with communication between patients and doctors because I feel like they can often turn stressful when we already have enough to deal with. Rather than sitting there with my frustrations, I feel like ImproveCareNow gives me the ability to do something to change that."

Favorite Candy: Dark Chocolate

If I could travel anywhere, I would go to....Iceland! That was my one wish, and I got to go!

In my free time, I like to....get creative and do art projects!

My role model is....my boss at CHOP. She herself has dealt with a lot with her health and is very successful. She wanted to help me succeed and has guided me every step of the way. She is very nice, and giving with her talent and time.

My ideas? "My vision for the Communications Task Force is to use it to create a program that allows patients to have a direct role in educating doctors on helpful listening and communication strategies when working with patients."

PAC members working hard at the Fall 2012 Learning Session (Back when we only needed half a table!)

Bianca, 15, Michigan

"I love that ImproveCareNow is more than just a collaborative effort between doctors and nurses; it involves patients, too!"

Favorite Candy: Sour Patch Kids

If I could travel anywhere, I would go to....Italy!

In my free time, I like to....take my dog on walks.

My role model is....my maternal grandpa. He is incredibly strong. He survived World War II before relocating from Italy to the United States and making a living for his family.

My Ideas? "Nurses have a lot of helpful knowledge and experience that would be helpful to PAC. Becoming more collaborative with the nurses of ICN can give the Advocacy taskforce another perspective for projects."

In 1999, at my 2-month check-up my family learned I have Turner Syndrome. Before my 6^th birthday I had ear tubes put in; tonsils and adenoids taken out; a tethered spinal cord released; my bladder and kidney tubes reconstructed, and was on daily growth hormone injections. I was regularly followed by an Endocrinologist, Urologist, Nephrologist, Allergist, Cardiologist, and the “team captain” my Pediatrician. Despite all of this, I didn’t look sick. People thought I was vibrant, brilliant, and basically a healthy, cute little Muppet.

I've spent two weeks now at Cincinnati Children's Hospital, partnering with ImproveCareNow colleagues here in developing opportunities for patient engagement. Yesterday, fellow PAC member Alex invited me to be present at an orientation for newly diagnosed IBD patients and their families. As I sat at the "staff" table, I was hit by a quiet wave of shock. It's been over six years since my diagnosis. Over six years.One moment, I looked at a girl of about fourteen in the audience and saw my younger self in her. At the same time, I know I've changed in meaningful and (then) unimaginable ways since my diagnosis.

It was the spring of 2007, and I was finishing up my junior year of high school. It had been the hardest year of my life with classes becoming increasingly more difficult and a mysterious illness plaguing my body.  With daily diarrhea, debilitating stomach cramping, anemia, and other severe problems (which I will spare you from) it became clear that something was seriously wrong –– it was more than just the gluten sensitivity and irritable bowel syndrome I was previously diagnosed with.  My illness was at a tipping point and my quality of life had decreased dramatically.

I was finally given a colonoscopy and subsequently my mystery was solved: I had moderate to severe Crohn’s colitis.  While I remember feeling relieved to finally have a diagnosis, I was also extremely disappointed that it had taken nearly a year. How much needless suffering had I endured?  Soon after my diagnosis and one failed surgery later, I made the transition to the UCSF pediatric IBD clinic with Dr. Mel Heyman. This may have been the most important decision of my life. Dr. Heyman, along with Laura, the nurse practitioner and a team of other medical professionals, identified the right medications for me, referred me to an exemplary surgeon at UCSF and ordered additional tests. Over the following months, the substantial decrease in my symptoms was nothing short of miraculous. To me it felt like being released from a confining and painful space, into one that was warm and safe.

Over the years, I have felt truly empowered by the team at UCSF to take an active role in the treatment of my illness. Some of the modifications I’ve introduced into my care plan have involved: a gluten and dairy free diet, the intake of potent probiotics, and getting plenty of exercise. I am an avid surfer, and feel really energized by the rough waves at Ocean Beach here in San Francisco. I have also recently become interested in how psychological stress may negatively impact patients with IBD, and would like to investigate this further. I am grateful beyond words to have had Dr. Heyman as my pediatrician and to be currently volunteering my time as part of the UCSF IBD team.

Andrew graduated from the University of California, Santa Cruz with majors in Neuroscience and Psychology. He is currently volunteering with the UCSF IBD clinic, and plans to attend medical school starting in the fall of 2015.

On behalf of the Patient Advisory Council, we would like to introduce you to Josh. Josh is going to be sharing some comics/animation as his schedule allows, and we are very excited that he has forwarded us his first comic (and a link to an amazing video he created). Enjoy!

Sami + Jennie

Hi! I'm Josh Weisbrod, an animator and comic artist. Currently I'm an MFA candidate in USC's animation program.

Last year I made an animated film about my diagnosis with Crohn's disease (available to view at https://vimeo.com/81004804). But there were an arduous several years leading up to my colonoscopy in Medical Adventure Power!! Here is the story of the horrible Hamburger Helper meals and frequent trips to the bathroom that led me to the first of my (now 7) colonoscopies:

Image courtesy of Teerapun / FreeDigitalPhotos.net

My daughter asked me to write an honest retrospective on how she wasn't always like how she is now. The changes happened on her terms, in her time, on her own. And, as well as I know her, even I didn't see it coming. I view that as the “even better” part.

In honor of IBD Awareness Week, which wrapped up on Saturday, I thought I'd come back from my blogging hiatus and talk about what it means to be an advocate.

Over Thanksgiving break, I had a revealing conversation with my mom about my life in high school with ulcerative colitis. Her memories of how I coped with UC are not always how I remember myself coping. There were things that I heard from her perspective for the first time, and some of them were hard for me to revisit. I was reminded that I was once a vulnerable high-schooler - and while this is/was true for all of us, it was nevertheless hard for me to be faced with things from my past that I had unknowingly blocked for years.  I remember how much I once idolized many of the 'popular' IBD bloggers. I didn't really begin regularly reading IBD blogs until my senior year of high school, but once I did, they had a strong influence on me. One blogger ran a few opportunities for her readers to submit to group projects, and I emailed her a submission once. I remember just glowing when she responded. Of course, I realize now that she's just a normal young woman like me with IBD, but she was a celebrity to me then. It was around this time that I first started to imagine that just maybe I would one day be like her. That I could be an advocate, too.

At the last ImproveCareNow learning session, a mentor gave me a piece of advice I've carried with me since: "As you go forward, no matter how much training you have or how brilliant you are, never assume you know best. Always listen."

On Saturday mornings, I work as a child life volunteer at Arkansas Children's Hospital, where I follow a variation of the same rule. I play an important role, but before I knock on each and every door, I tell myself that I come last. I am there to listen and try to make make magic happen; no matter how much experience I think I have, the kid is the expert. When I enter a room on the unit with my bag and my clipboard, I am a stranger. By time I leave, I'd like to be a friend - a goal not always attainable, but always set. I try to listen more than I talk. I pick up on the little things. Would she like glitter paint more than regular paint? Princess coloring book or puppies? Should I drop a sheet of stickers in my bag before I come back?

Saturday morning, I met Tyler (name changed) who didn't look like he was having the best day. He was eight and hanging out with his video games, but I've become pretty good at distinguishing bad day faces from good day faces - and this was a bad day. I crouched down by his bed and did a run-down of "my collection" in the playroom. With Tyler, his face lit up when I suggested paint, and so I knew what to suggest next. These are the moments where that goal of making a special connection becomes possible; with the right words and the right timing, I can make a hospital room glow. It's a kind of magic all its own, but one that anyone who works in a children's hospital should recognize.

"Hey Ty, I have an idea." He looked up. "I can bring you some paper to paint." He nodded. "But do you like to paint other things too?" He looked at me funny. "Well, sometimes, I let kids I really like paint my face." This is technically a lie - only one other kid has painted my face in the hospital (his hilarious doctor's idea actually) - but Ty didn't need to know that.

Ever seen a YouTube video where a kid is asked if they'd like to leave for Disney World in about five minutes as a total surprise? He said yes with the same enthusiasm. To be honest, I didn't expect quite such a dramatic response.

His lunch came right at that moment, so I excused myself to finish up my rounds - and encouraged him to eat up. I'd be back soon, and he had work to do then.

Thirty minutes - and several delivered board games and art supplies - later, I was back in Ty's room. "Ready, bud?"

I'm about to show you what happened next - but the best part, and what I can't adequately show you in a photo or even really describe, was how much of a kick he got out of it. He had this mischievous laugh that led one of the nurses in the hallway to peek her head in to see what was going on. When he finished his artistry, he sent me onto the catwalk - or out to the unit hallway, if you'd prefer to call it that - to show me off to the nurses. Finally, I was allowed to take a look in the mirror. (Thanks to my PAC co-chair, fellow blogger, and texting bestie Jennie David for the photo comparison!)

I asked Ty if I could hire him to do my make-up for Winter Formal, but sadly, his schedule has no openings right now.

I get to do this every week. I get so excited about it, which always leads to questions about why I volunteer with sick kids. How could I want to start my weekend in a children's hospital. Isn't it sad. Statements, not questions. I do not deny the sadness, but I have had the privilege of seeing so much happiness. I might come last, but the joy I have at the end of each shift makes me feel like I am first. My work with ImproveCareNow is remarkably similar. You know my name and you hear my stories, but I want you to know that I'm here not just for me, but for every patient - your patient. I represent, but I'm last. I know it's a sentiment that Jennie and I share, and the code by which we work.

I've stopped trying to guess what's ahead for me. My life is changing by the month these days. But I hope that, even as I grow and evolve into new roles, I'll always know how to spark the magic that can get the room to glow. I want to be brilliant as a physician, but more than that, I want "my kids" to feel brilliant.

It's no secret on this blog that Jennie and I both adore Taylor Swift, but I perhaps admire her liner notes more than any particular lyric. One in particular inspired me to share my story, even when I felt like I had nothing worth sharing:

"There is a time for silence. There is a time for waiting your turn. But if you know how you feel, and you so clearly know what you need to say, you'll know it. I don't think you should wait. I think you should speak now."

Jennie and I have a secret theory that T Swizzle is an ImproveCareNow supporter all the way. "We Are Never Ever Getting Back Together" is just too easily about a colectomy. Alas, we are currently without any proof to back up our theory, but like any of her songs, it's quite obvious Taylor wrote the above quote with inflammatory bowel disease and ImproveCareNow in mind.

Taylor was writing, of course, about the Healthier Together campaign. She - and we - want you to speak now. Every family connected to an inflammatory bowel disease patient has a story to share - and we want need to hear and share those stories.

Networks like ImproveCareNow are leading the way to ensuring innovation, quality, safety, and value for every patient, every time. We're all about engaged care, empowering patients, families, care teams, and researchers to work together and share information seamlessly to drive improvements in the care of kids and teens who deserve a fantastic quality of life and a cure. It's not just your doctors and nurses who are the catalysts for change. It's all of us - little and big. When we work together, kids with IBD get better, faster.

Healthier Together is a movement to support ImproveCareNow through the collection of 1,000 statements of support by September 15, 2013. What can you do? If you are a patient with IBD, a family member or friend of a patient with IBD, a clinician, a researcher, Taylor Swift, really ANYONE, you can (and should!):

1. Visit and share www.healthiertogether.org.

1. Write a letter (or even just a sentence or two)! Why do you believe it's important for patients, parents, care teams, and researchers to work together in a learning health system like ImproveCareNow? Short, long, poetic, epic - anything goes!

1. Create a video! Let us hear your story. Make it a collaborative effort and interview your care team. Gush about your dreams for IBD care and how learning health systems like ImproveCareNow can help make them a reality.

1. Draw a picture! Too young to write? Are you an artist at heart? Not sure how to put your thoughts in words? Show us your vision for collaborative care and why it matters for inflammatory bowel disease patients and families.

1. Take a photo! Hold up a sign, show us a memory, or let your smile speak for itself.

All letters and media can be submitted at www.healthiertogether.org. Photos can also be tagged with the hashtag #healthier2gether on Instagram (follow us @healthier2gether, too!)

Jennie and I share our stories all the time, but it's not enough. We need the little stories, the big stories, the crazy stories, the boring stories - because no story is ever unimportant. Write it or draw it or speak it into a video camera or post it on Instagram, but whatever you do, I don't think you should wait.

Bonus points to anyone who can get Taylor Swift (@taylorswift13) to submit a post to the Healthier Together campaign.

S+J