ImproveCareNow Patients


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.

IMG_2301 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.

Screen shot 2013-10-25 at 2.42.09 PM 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.

IHI Conference Dec 9 2014 - Sami presentation photo 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 future of IBD research is in your hands

ImproveCareNow has partnered with Patient PrioritiesThe goal of medical research is to find answers that will improve the lives of patients. But how can we be sure the answers really matter if we don’t ask patients what they want and need to know?

ImproveCareNow is committed to supporting research that represents patient and family perspectives. As part of our funding from the Patient Centered Outcomes Research Institute and the US Agency for Healthcare Research and Quality, we are working with leading health care researchers from Children's Hospital of Philadelphia, Katherine Bevans, PhD and Chris Forrest, MD, PhD (selected publications by Dr. Forrest) to use new ways to engage everyone in the IBD community in setting our direction for learning. They have created a website called Patient Priorities to find out what YOU want and need to know about Crohn’s disease and ulcerative colitis (IBD). You don’t need any research experience to participate.

You will be asked to recall moments during your/your child’s diagnosis and/or treatment when you wanted more information, or had questions that were not answered. Maybe you had questions when comparing two treatment options, or making the decision to end a particular treatment. Any difficult moment when you needed more clarity and information is important for researchers to know about.

Responses to the 10-minute survey are anonymous and will be grouped with many other responses to develop a list of “Learning Objectives.”  Some Learning Objectives may be answered using existing research. Where there is good research to answer common questions, ImproveCareNow will be making more tools and resources for families available through care centers and in our online communities: Facebook, Twitter, here on LOOP, CIRCLE, the ICN Exchange and Smart Patients. Those Learning Objectives that are unanswered and require more research will be added to the ImproveCareNow research agenda.

We’ve heard from many patients with IBD and their parents. It would be great to hear from many more to be sure the Learning Objectives really represent a wide variety of experiences.

Here’s your survey: http://bit.ly/lrnobjs

This is an important opportunity for us to shape the future of IBD research. We will be sharing our results and what we’ve learned along the way, so you can see how we’re outsmarting IBD together.


Gutsy 3 & 4 Take On The Learning Session!

As this year's PAC Scholars Bianca and I (Isabelle) got to go to the 2014 Fall Learning Session in Chicago. We had such a great time and just wanted to share some of our thoughts about the LS before, during and afterwards!The 2014-15 PAC Scholars Bianca & Isabelle

Before:


Isabelle: Leading up to the Learning session I was so excited! There were so many texts and e-mails and many plans to be made (plane tickets, hotel rooms, and most importantly snack choices). As it got closer I was a little nervous, as I am the only one of the PAC representatives who had never been to a Learning Session before, but mostly I was just so excited to see/meet my fellow PAC leaders and so many others!

Bianca: Before the Learning Session I was super excited to see everyone again and be able to meet my fellow PAC Scholar, Isabelle! Since I had already been to a few Learning Sessions, I knew what to expect (how busy it is, the amount of new people I would be meeting,etc.), but I was looking forward to working on a different level with the PAC. Before the Learning Session, I got to help out with the pre-work. "Grading" each center's vision for their ideal treatment center and picking my favorites was a lot of fun. I loved reading how big every center's dreams were for their own perfect IBD center.

During:


Isabelle: I met so many interesting people. It was so amazing how nice and down-to-earth everyone was, including the big-shot doctors. They all introduced themselves by their first names and seemed genuinely interested in hearing about where I go to school, what I am studying and my dreams for my future and the future of the PAC. There were many planning sessions with just the PAC and it really got me excited about our future projects and being in the Learning Session environment helped make those projects feel connected to a larger purpose.

Bianca: During the Learning Session, I met so many more people than I had anticipated! It was great to be able to formally meet everyone and see how passionate each and every center is. I also got to spend a lot of time with Isabelle, Jennie, and Sami, which was awesome to get to know them on a different level, rather than throught text/emails. The past few Learning Sessions I had been to were nice and helpful, but I like to be more involved, so this Learning Session was by far the best!

After:


Isabelle: I made so many connections and learned a lot about ICN at the Learning Session. It was a lot to take in but I really enjoyed the entire event and can’t wait to go back again, this time with even more knowledge heading into it. Meeting my fellow PAC leaders Jennie and Bianca and of course seeing Sami again was so much fun and I feel like I am so close with all of them already. I am very excited for our future and the future of ICN!

Bianca: Afterwards, I was beyond excited for what this year would bring. This LS was great becuase, like I said, I got to spend a lot of time with the PAC leadership, being introduced into the PAC leadership position, setting goals, ordering room service, and just hanging out with each other.  Though the few days were fun and enjoyable, things did get hectic at times, but overall a great, well spent, work filled weekend. I cannot wait until the next LS, because the experience of each Learning Session is like no other - the connections made, the work being done, and of course the laughs and tears shared. I am beyond excited for this year!


I wish I knew _______ about IBD.

Speak out. Tell ImproveCareNow what IBD questions need to be answered.


What do you wish you knew about Crohn's disease or ulcerative colitis? Do you have questions about diagnosis or treatment options? What about daily management of IBD? Maybe you've wondered if a certain drug or lifestyle change would help. These are important questions! The answers could have an incredible impact on your life, the life of your child, the lives of many patients living with IBD.

ImproveCareNow is ready to answer your important questions – but we need you to tell us what they are!


Patient Priorities IBD Learning Priorities ProjectTeens and young adults with IBD, and their parents and clinicians are invited to participate in the IBD Learning Priorities Project - a study being conducted in partnership with Patient Priorities. Participants will be asked to share questions and concerns about IBD, and it's treatment, management, etc. in a confidential survey. The results will be used to create a list of the top learning objectives for ImproveCareNow to focus on.

Speak out! Tell us what you need to know. Go to patientpriorities.com to complete your brief survey, now.


Brain Science, Stress and IBD

When I was diagnosed with moderate to severe Crohn’s disease 7 years ago, I wanted a simple and straightforward “cure all” treatment. To my dismay, I learned that relying on one silver bullet drug, would not suffice. Controlling this disease was like trying to tame a wild animal and would require balancing many factors. I became attuned to how psychological stress and poor diet negatively affected my symptoms. With a careful combination of transient targeted steroids, immunomodulatory drugs, vigorous exercise, and lifestyle changes, I regained my ability to thrive. I returned to my former state of athleticism, regularly tackling the intense and unforgiving northern California waves with my surfboard.Andrew and his surfboard getting ready to tackle the northern California waves

 

I soon entered the University of California, Santa Cruz’s neuroscience and psychology programs. While I was intensely focused on my academics and extracurriculars, the foundational nature of the human brain became seemingly more important. Comprised of approximately eighty billion neurons or brain cells, the vast intricacy of this three pound organ is extraordinary: The relationships or “connections” between these neurons –– called synapses –– outnumber the stars in our home galaxy. These small spaces are in actuality busy microcosms of information transfer between neurons. Minute chemical messengers called neurotransmitters serve as the communicational media. It is widely believed that the way in which brain cells are connected and their chemistry determines our psychological state.

 

An image of a neuron

 

I took note: under times of intense pressure or stress my physical symptoms manifested. Was this just a mere coincidence? Or was there really something going on? With a neuroscientific lens, I investigated.

 

I found that the connection between the brain and body and its interactions in disease are well-recognized by the scientific community.1 Modern day stress is seemingly connected to our most primal of reactions – activating a “fight or flight” response – that would be more useful to us in prehistoric times in our interactions with predation. A stress hormone called Cortisol serves to direct our body’s resources (in the form of glucose) away from non-vital functions like digestion and immune activity. For this reason, scientists believe that prolonged stress plays a pivotal part in a myriad of autoimmune conditions.

 

The extent to which psychological states influence the disease progression of IBD is still somewhat unclear. Numerous studies and review articles, however, suggest that these psychological states play a role in both direct disease progression and how patients deal and cope with their disease. 2, 3, 4, 5

 

Reducing stress is just one of many changes that help me live with Crohn’s Disease. Further, just as important is staying informed and imaginative. This blog and the entire ImproveCareNow community represent a beautiful medium for these concepts to flourish. Thank you for your part in this community.

 

References:




    1. Sternberg E, Gold P. The Mind-Body Interaction in Disease. Scientific American Special Edition. 2002:82-9.




    1. Mawdsley JE, Rampton DS. Psychological stress in IBD: new insights into pathogenic and therapeutic implications. Gut. 2005;54(10):1481-91.




    1. Mikocka-Walus AA, Gordon AL, Stewart BJ, Andrews JM. A magic pill? A qualitative analysis of patients' views on the role of antidepressant therapy in inflammatory bowel disease (IBD). BMC Gastroenterol. 2012;12:93.




    1. Peters S, Grunwald N, Remmele P, et al. Chronic psychosocial stress increases the risk for inflammation-related colon carcinogenesis in male mice. Stress. 2012;15(4):403-15.




    1. Sajadinejad MS, Asgari K, Molavi H, et al. Psychological issues in inflammatory bowel disease: an overview. Gastroenterol Res Pract. 2012;2012:106502.

 


Learning & Leading Together

When I’m not leading improvement activities in the ImproveCareNow network, I’m busy raising a family. As a parent of young kids, I do a lot of bedtime reading. Recently, I was reading The Little Prince (Le Petit Prince) by Antione de St. Exupery to Finn, who is 7. After a few pages, Finn just wanted to go back to his other book (I will have to try again in a few years!) but it made me want to reread it after a long time.

 

This quote appears not far into the book:




"Grown-ups love figures...When you tell them you've made a friend they never ask you any questions about essential matters. They never say to you "What does his voice sound like? What game does he love best? Does he collect butterflies? Instead they demand "How old is he? How much does he weigh? How much money does his father make? Only from these figures do they think they have learned anything about him."

 

As ImproveCareNow builds an awareness and engagement campaign aimed at bringing many, many more patient and parent partners into our work, we have such wonderful models for storytelling about the “essential matters”—the story of the whole person, not just the figures like lab results, medications, and BMI. Our Patient Advisory Council (PAC) members so often share their stories as people, not just patients. They articulate their journey with IBD in ways that are wise beyond their years and make us pause and think about how we can try to be wiser and learn from them. Our Parent Working Group members have challenged us to see their children’s whole lives and faces when we look at the data we use to drive improvements. And our colleagues at Empowered by Kids are using their amazing commitment and individual talents to reach other families who need to expand their own “village.”

 

I am off to Chicago tomorrow for the ImproveCareNow Fall Learning Session. Learning Sessions are a time to celebrate the achievements of the past six months, but also to ponder how best to leverage the strengths of our community to do even more together. The essential questions for us now are: How will this Learning Health System reach and engage and partner with many more parents and patients? How can we pair the right people with the right action – bringing new energy and perspectives to how we run the whole network, and how things are done at each individual care center?

 

We know we will be even better at achieving our aims (the most important of which is getting more and more kids into remission!) with more people working with us, sharing their experience and talents and perspective. So as we plot out next steps for ImproveCareNow, I think we need to stay focused not only on “figures”, but also on “essential matters”. Our many parent, patient and clinician partners are already teaching us the importance and the impact of a story. I know I can’t wait to hear from—and really learn about—more and more of them.

 

The better we know each other, the easier it will be to create the future of ImproveCareNow together and to find joy in learning and leading together.

 

See you in Chicago!


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!?

PAC1 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."

IMG_8076.a 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."


Introducing Jessi! Read her story.

In 1999, at my 2-month check-up my family learned I have Turner Syndrome. Before my 6th 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.

 


Hi, I'm Randa and this is my story.

Randa Samaha was diagnosed with ulcerative colitis at age 5

I was diagnosed with ulcerative colitis (UC) at the age of 5. Or at least that’s when my doctors were finally able to figure out what had been going on for years. As a 5 year old I learned, in simple terms, that my body was “overreacting and attacking itself.


Hi, I'm Isabelle

Isabelle Linguiti

When I was first diagnosed with Crohn’s at age 15, I had absolutely no idea what that meant. For the first three months after my diagnosis I thought the medicine I was taking would just make it go away. I can still remember the day I asked how much longer I would have to take the medicine. My doctor looked surprised and then told me most likely for the rest of my life. After that I still lived in ignorance, thinking that taking the medicine forever would keep me totally healthy. It took months of intense illness to rid me of that notion. That’s when I fell into a deep depression. Everything seemed out of control and scary, and all I knew was that the rest of my life was going to be filled with this pain.


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