About samisophia

I'm Sami Kennedy. I was a 2012-13 Scholar for the Patient Advisory Council (PAC) for ImproveCareNow, and now co-chair the PAC. I was diagnosed with Ulcerative Colitis at 14. I'm a senior undergrad studying biochemistry with dreams of becoming a pediatric sub-specialist physician (maybe a peds gastroenterologist!). I'd love to hear from you!

Christian joins the Patient Advisory Council

PAC Member Christian HansenMy 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 pac@improvecarenow.org 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

Breaking a Promise

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.

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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.

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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.

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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.

The PAC is Ready for ICNLS! Are YOU?

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!?

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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.”

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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.”