“Actually,” I asked. “Do you have a smaller tegaderm to put over my port?”

The nurse, who’d already begun to open the larger salty green colored package stopped, looking up at me, and asked another nurse in the room to grab a smaller dressing.

[Editor's note: This post was written by Nicole Van Borkulo, a QIC working with the ImproveCareNow Network, specifically on patient and family engagement. Nicole wanted to take this opportunity to explain, from her perspective, why collaboration in healthcare - or working together to get healthier together - is so vitally important, and to ask you to please show your support for this work via the healthiertogether campaign.]

Why is collaboration in healthcare so important? Why are all voices needed to achieve the best outcomes?

Here is what I know…

I have spent the last 10+ years working as a Quality Improvement Consultant in the healthcare system. Much of this time has been spent working directly with safety net primary care practices.  The providers and staff at these practices are hardworking, mission-driven people who are really doing their work with the intention of making things better for their patients. And yet, there have been many times and many moments when I’ve been rendered completely speechless (no easy feat) by a comment or a process that is so NOT patient-centered.  How can these bright, amazingly gifted people not see that what they are doing isn’t the best approach or process for their patients and families?

Please don't misunderstand, I am not writing this to be in any way disparaging of the work or the people. But it illustrates an important point and something I have come to realize is that we – as humans – sometimes lose site of the importance of asking others what really matters TO them when we are doing something we think matters FOR them. Case in point: when my oldest son was about to turn six (he is now 16), I planned an over-the-top car themed birthday party. He loves cars! Of course this was going to be just perfect for him.  Two days before the party, he was crying in the kitchen telling me he didn't want a car party.  He actually said, ‘…but you didn’t ask me, Momma…’ Hmmm… I was so sure that what I was doing for him was the best thing. My intentions, my efforts were good; my assumptions weren’t. I hadn’t asked the person with the biggest stake in the game what mattered to him.

Part of my time is now spent working for ImproveCareNow (ICN), an innovative network of mission-driven care centers working tirelessly to improve the care and outcomes for pediatric patients with IBD (Crohn's disease and ulcerative colitis). If you read this blog regularly, you know some of the stories and the people involved.  The physicians and care teams have shown what real improvement can look like. The remission rate (77%!) is impressive and was unprecedented prior to ICN.  But, we aren’t at 100%.  Now is the time to broaden the pool of collaborators, to include the voices of ALL stakeholders in the effort.

It is time to start asking 'what more can be done', or 'what can be done differently to increase the remission rate even more?' ICN wants the opportunity to build a truly collaborative network that includes leaders from ALL healthcare stakeholder groups at the table - patients, families, care teams, and researchers. ICN wants to be a network truly led by those with the biggest investment in the outcomes. ICN wants all children and young adults with IBD to get better, faster.

Can you help? Will you help by September 15^th?

If you haven’t already, please go to healthiertogether.org and support the campaign by sharing a story or picture or video or statement to let us know that you also believe collaboration of this kind in healthcare is so important – to you, to your family, or to others you may or may not know.

To truly improve the system of healthcare, we need to hear all voices. We need to hear from you to improve care NOW.

Throughout college, I worked in a research lab studying coping strategies of women who are HIV+, and one thing that we looked for in each participant was ‘mindfulness.’ To be mindful is just what you might think: being conscious of what’s going on, what you need, and what others need around you. Mindfulness is being in the moment, although not so much being spontaneous as being considerate to yourself and to others. If you ask me, mindfulness is one of the hardest skills to train yourself on and put into action.

Dearest 13 year old Me,

You want so badly to be brave, but you don't think you are.  Instead, you believe that crying means weakness and guard yourself from others to hide from the feelings of insecurity, embarrassment, and frustration.  Here, where you come to the point of realizing how poor and needy you are, is where you will begin the journey of believing that you are brave.

No, you won’t ever like fruit punch, Nesquick, Jello, being touched in spots that needles go, the smell of anesthesia, or the look of medical equipment.  You will have to encounter these often and will decide down deep in your soul that you will not be overcome.  You will make bracelets to raise awareness that almost all the girls in your high school will wear, and will raise 5,000 dollars for research.  You will run a half marathon. You will graduate Summa Cum Laude. You will be a teacher.  You will have overwhelming support from people you love you.

Having Crohn’s is messy, difficult, sad, angry, emotional, unjust, and terrifying.  You will feel many of these things.  It will be hard because it is these feelings that will betray you and cause the traumatic events to be seared in your memory.  I’d like you to fight to control your mind, to shut the door on unhelpful memories, and to continue to move forward.  Your feelings are valid but they are not the only truth.  They are not who you are.  Who you are is loved.

At the end of the day you will face challenges, and on top of that you will have to battle Crohn’s.  I bet you wish you could catch a break. You feel trapped inside your own body that doesn't quite work right; that may be the hardest part of all.

This is the part where you remember you are braver than you think.

I tell my Kindergartners to make choices that are kind.  Isn't that the Kindergarten explanation for how Crohn's disease works; it causes your body to make the unkind choice to attack itself. Ever since I was 13 part of my daily life is deciding how to manage having Crohn's disease.  I am free to make choices that heal or choices that destroy.

Being a part of the Patient Advisory Council, Take Steps, and CCFA encourages me to make decisions that bring wellness to myself and others.

If ERs gave out awards to their most loyal customers, I’d be a no-brainer for the #1 Customer award. But, since I live in reality, I collect medical bracelets in lieu of my big award.

Ending up in the ER on a Wednesday around midnight was an unexpected way to spend the night. When my Dad and I started walking toward the way-too-familiar ER entrance, I turned to him and said, “This is how I spend a night out on the town.”

Jennie: 0, Body: 1

Ironically, my ER-dash had nothing to do with my Crohn’s, but rather a separate condition that leaves me prone to blood clots. I’d developed some chest pain earlier in the evening and given my odd combination of past history with clots and the fact that I'm now working in cardiac surgery (and being all too conscious of heart problems), my parents and I figured safe was better than sorry, even if it did mean adding another metaphorical stamp to my ER frequent flyer card.

FYI: Chest pain is like the golden ticket in the ER – you whiz right in and before you know it you’re strapped to an EKG and instructed to stay still (warning: not an encouragement to report chest pain to triage unless you have it!). For an ER that I’ve spent way too much time in, this was by far the quickest trip to a room yet, and as I was being taken to the room, I noticed a sign that bugs me every time.

STAFF ONLY

Capital letters, bolded, just in case you couldn’t read it on the first go-round. I remember the first time I saw such a sign, in my elementary school, walking by the staff room and feeling indignant. Staff only? I thought to my self. If staff are people who work somewhere, then I’m staff too because I work at school. Why are students not considered staff? Yes, I’ll admit that staff has a more nuanced meaning than simply ‘working’ at a place, but even so it bothered me then and it bothers me now. Especially given that I actually am a hospital employee now, albeit not in the ER, do I dare cross the threshold of the STAFF ONLY areas?

Spoiler alert: I did not stomp through the STAFF ONLY hallways proclaiming that I too was staff, but I did something better. The ER resident assigned to my case was a young, dry-humored doctor who seemed patient and kind even if it was the wee hours of the morning. When he asked for my past medical history, I squinted at him and told him I wasn’t really sure where to begin. I began listing my medical conditions and issues as he busily scribbled it all down, asking some questions and prompting me to recall other relevant medical history. Every addition to the list made him raise his eyebrows and I couldn’t help but laugh as I continued to rattle off problems – truly, it would have been kind of funny if it wasn’t so ridiculous. I intentionally used all of my medical jargon to show him that I knew what I was talking about. He smirked at me and said, “When are you going to med school?”

At one point, he looked up from his paper and said, “You know, I thought I’d come into the room and meet this 21 year old girl with multiple problems and risk factors and she’d be all whatever, but instead I come in here and you’re all bright and happy, I’m just like, I don’t know.”

“Well,” I told him. “You know the body, even when it’s crappy, is incredibly resilient and you can still do everything and do what you want.” I proceeded to tell him about graduating on time from college with double honors, and he held up his hand for a high-five. It’s official folks: high-fiving a doctor has been crossed off my bucket list. And to be clear, it is not that I think I’m extraordinary, but I do think I am normal and I think that is exactly what struck him.

I hope that he remembers me - and the notion that living with a chronic illness is still living - years from now when he’s a little older, a little greyer, and has his own patients without an attending around to keep tabs on him. I hope I taught him something that he couldn’t learn in a textbook. I hope I earned my honorary medical degree by showing him that doctors can and need to learn from patients just as much as they need to work with patients. There may be hallways marked off with STAFF ONLY, but that at the end of the day, it’s not about labels or the costumes of lab coats or Johnny shirts, but rather about the collaborative relationship, the give and take, the listening and the caring between doctors and patients.

Because we’ll get a lot farther if we work together versus working alone.

Jennie

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

As the countdown to the ICN Strategic Planning Meeting dwindled, I began to pack my bag for my 30-hour trip to Washington DC. While I was truly excited to see my ICN family and my better half (cough cough, Sami), the summer heat pricked at my cheeks and I could already tell that I was worn out from working and my flare before my trip even began. But anyone who knows me will tell you that I’m incredibly (and sometimes stupidly) stubborn, and so I set my sights on Washington and boarded the plane.

Reuniting with Sami was wonderful! It did involve giving her the wrong directions to where I was standing at first – but we finally found one another in the airport and eventually made our way to the hotel. As an early birthday present, Sami had packed a ‘Twizzlers Party’ (note: my current flare leaves my diet restricted to only a few things, most notably Twizzlers and an assortment of candy). We dutifully ate the candy and caught up on life and all things gutsy - as good gutsy girls do.

Thursday morning found us up early, as the alarm went off playing a Taylor Swift melody (of course). We got ready and headed down to the beginning of the meeting, where a one pound bag of Twizzlers was waiting for us for a flare-friendly lunch (you know you’re loved when!). As always, Sami and I continued to be overcome with delight and excitement at how sincerely patients are considered and integrated into the strategic planning for the network. ICN truly wants to improve care this very moment for children and their families, but they know they need everyone’s input to do it. I think it’s fair to say that we’re all pretty thrilled with the exciting things that will continue to develop in the years to come.

But this post isn’t really about Washington DC or the ICN Strategic Planning meeting. It’s about being nearly 22, fresh out of college and into a ‘real person’ job, and very sick. It’s about my body not working the way I want it too and being simultaneously frustrated and determined. By the time I was ready to head back home, a mere 24ish hours after arriving, my body was throbbing with pain and the dryness of my mouth and quickened pace of my heartbeat informed me that I was quite dehydrated. The thought of the two plane rides home – getting into the airport at midnight and then having to get up early the next day for a doctor’s appointment and work – made me make my ‘this is ridiculous’ face. I just wanted to be home. Well, moreover, I just wanted to feel better.

On the flight from Toronto to Halifax, I found my aisle seat, 27D, where the window passenger was sitting with her multitude of bags. “Do you think there’s someone sitting in between us?” She asked, fumbling with her purse. I shrugged and offered a diplomatic response of uncertainty, suggesting she use an overhead bin to store some of her things. The pilot came over the PA to announce that the flight was totally full, every seat was taken, and to use space as wisely as possible. So much for some elbow room, I thought.

I sat and waited for the middle seat person to claim his or her seat. By this time the plane was largely full, and I was ready for every passing person to point to the seat and slither past me. And then she walked up to the row – she being Ellie Black, a Canadian Olympic gymnast who’s from Halifax. I sat up in my seat, suddenly my heart pounding not because of dehydration but because of my girl crush on this incredible athlete. She pointed to the seat and I jumped out of mine to let her in.

“I’m sorry,” I said. “But you are Ellie Black?” She nodded with a big smile. Of all of the Olympic athletes, I would recognize so few, but the fact that one sat next to me made me momentarily forget about my poorly working body and focus on her. She was kind and lovely and very sweet, happily chatting with me despite her 27+ hour plane journey home from Russia (where she’d been in a competition and taken home two medals). I sat there amazed, 1) that she was talking to me and 2) how incredibly resilient the body can be. It might not seem like it, given that I have no medals or Olympic memories of my own to share, but our bodies had something in common – they are super duper resilient. Hers might be able to do flips and turns while mine struggles with functioning, but ultimately both of our bodies can be pushed to do things most people don’t think is possible.

When the plane finally touched down in Halifax, it was midnight and Ellie and I both blinked awake, having falling asleep mid-flight. I pulled out my agenda book and sheepishly asked her to autograph it, which she agreed to without hesitation, addressing it personally to me. In her script writing, she scrawled, ‘Dream Big’, and handed it back to me, smiling. I thanked her profusely and safely tucked the autograph back in my bag.

Maybe the airplane-gods thought I needed a little pick-me-up, or maybe it was just plain ol’ luck, but whatever it was, it reminded me that even if my body doesn’t work perfectly, I am still a champion, a fighter, and a resilient person. And now compliments of the heart-warming and inspirational words residing in the back of my planner, I can carry that message with me wherever I go.

Jennie

To my 12-year-old, newly diagnosed self:

For a long time, you will regret your decision to tell your parents that you were hurting. You will wish you had kept the pain and the blood and the fear a secret so that you wouldn’t be different and sick.  You will wish it very much, using up your wishes on birthday cakes and fallen eyelashes. But first, let me tell you, you did the right thing and that not telling your parents would not have kept you from getting sick.

Hear the voices behind the blogs - Patient Scholars Jennie David and Sami Kennedy will chat via LIVE Webcast with Dr. Peter Margolis about their work with the C3N Project and the ImproveCareNow Network this Thursday, June 27.  Jennie and Sami are part of the Patient Advisory Council (PAC), where they collaborate with a diverse group of patients to help their generation and the next by working alongside researchers, clinicians and families.  What does a PAC member do?  You’ll have to tune in Thursday and hear for yourself.

Find out more about the PAC here, and make sure to bring comments and questions to the LIVE discussion - register now!

C3N LIVE Webcast | June 27, 2013 | 12 PM ET

Not available to join the Webcast?  Follow and join the discussion in real-time on Twitter.