ImproveCareNow Patients


Drum Roll Please...

In only a couple of days, there will be a flurry of texting between Sami and I, sending pictures of packing and potential Learning Session outfits back and forth. Yesterday I sent Sami a few pictures of a sample outfit, to which she instantly texted back, “I like it!! It looks professional and cute!” (Note: said outfit was, indeed, packed immediately)

 

Last night I was pouring over an email with the Learning Session agenda, clicking on the various hyperlinks for teasers about the plethora of exciting things to come. One link sent me to pictures posted on the ICN Exchange of various ImproveCareNow teams; I chuckled at the Boston Children’s Hospital team’s faces photo-shopped onto duck statues (a la Make Way for Ducklings), the Children’s Healthcare of Atlanta team’s matching t-shirts, the MassGeneral Hospital for Children team’s “We love ICN” sign (complete with a full GI tract doodle), and – finally – the ICN Exchange “Team Oscar Selfie” (a gutsier version of Ellen’s now infamous Oscar celebrity selfie).

 

Nothing like previewing pictures of the big-hearted, gutsy-humored, determined-with-all-their-might-to-change-chronic-illness-care care center teams to get me excited about the Spring Learning Session!

 

Spring 2014 ImproveCareNow Learning Session

 

Sami and I have tried (and, notably, failed) at accurately articulating the pure excitement, joy, motivation, and positive energy that’s simply contagious at the Learning Session. Here in text, it sounds cheesy and like ImproveCareNow is prodding us to write down such ooey-gooey sentiments. But, let me reassure you on behalf of Sami and myself, our ooey-gooey praise is exceedingly well-deserved and comes directly from our hearts (read: guts).

 

In addition to the undeniable culture of optimism and innovative thinking, there are always particular sessions we just cannot wait for. Following are the things we look forward to most at the Spring Learning Session:





    • PAC Reunion: The Learning Session is the one time when the PAC Leadership is able to brainstorm in-person (and also eat lots, and lots of candy!). We look forward to seeing each other face to face, and are always astonished by the amount of important work we get done in a couple of days. This Learning Session will be the first where our full PAC Leadership will be in attendance (PAC co-chairs - Jennie & Sami, and Patient Scholars - Katherine & Tyler) – we just can’t wait!!

 


    • QI Fundamentals: Sami and I stumbled upon this last year as we both arrived early, and were quickly enthralled with the phenomenal centers who are our newest family members in the network. This is a wonderful opportunity if you’re in need of some inspiration (note: by the end of the weekend, you’ll be bursting with inspiration!) or a Quality Improvement refresher, and is a fantastic way to meet upcoming superstars in the network.

 


    • Opening Reception: Here, there, and everywhere – the reception is filled with amazing people and is an awesome chance to network, socialize, and get the 411 on the network’s progress and innovations with the variety of poster presentations. Also, keep an eye out for some Patient Advisory Council members who will be reprising their roles interviewing reception attendees!

 


    • The Learning Health System Today and Tomorrow: The opening never fails to deliver in motivating every cell of every attendee, and – who are we kidding – we always love seeing Dr. Margolis and Dr. Colletti (and, if we’re lucky, they’ll coordinate their outfits!).

 


    • Lunch: Food, food, more food, and lots of networking! We always fill up with some nourishment and get the chance to meet new centers, parents, and the clinicians at various centers that we are humbled to call friends.

 


    • The Learning Health System, The Months Ahead: The closing is reliably the time when you will need a stash of tissues compliments of the remarkable speeches from parents and patients. After the excitement of the weekend and the endless research ideas and connections you’ve developed, the closing is a perfect opportunity to digest (yes, pun intended) the entire experience and head home with genuine motivation that you won’t soon forget.



We can’t wait for the collaboration, the innovation, the passion, the insight, and to continue to watch children and their families living with IBD receive better, and better holistic healthcare.

 

So pack your bags (or join us on Twitter and follow the Learning Session hashtag #ICNLS) and get excited – the Spring Learning Session is just around the corner!

 

Jennie + Sami


Transitioning at Children's Mercy Hospital

When I was little, I had a lilac-purple colored bicycle. There were shiny streamers at the ends of the white handlebars, which would often catch the wind as I rode through a field near our house, my parents cheering and running behind me holding tight to the lip of the seat. Having gotten used to the stable comfort of riding my tricycle around our quiet suburban cul-de-sac, I remember feeling both terrified and thrilled at the expanse of the field and my ‘big girl’ two-wheeler. Learning to ride my bike – like most things in life – was a skill that required a lot of technical and emotional support from others, and a belief that I could do it.

 

A few months before I graduated high school at 17, I went to the hospital with my Mom for the so-called “transition appointment.” We had been sheltered and insulated in the pediatric world, full of pastel-colored murals, teddy bears, and bandages that were cut into heart shapes. The adult medical world was cryptic and distant – a new building, new doctors, new nurses, new everything. While everyone was perfectly polite, the transition appointment consisted of being told which adult doctor I was going to see and when/where I had to show up; there were no choices, no decisions, no questions. And there was no road-map for how to get from point A (pediatric care) to point B (adult care).

 

There are two important concepts that often get conflated: transition is the careful, premeditated, and inclusive process of educating and empowering an individual to be responsible for one’s health, while transfer is the physical change of moving to a new medical facility (e.g., pediatric to adult hospital). Transition is the meaningful process of gaining and growing skills like medical literacy, advocacy, adherence strategies, and so on. It requires a team of people (patient, parent, pediatric and adult doctors, nurses, etc.) working together to empower the patient. It’s the difference between learning to ride that little purple bike in a big field with lots of support versus just being given the bike with no guidance about how to use it.

 

According to Dr. Michele Maddux, a clinical psychologist at Children’s Mercy Hospital, who helped develop their transition program, Mercy’s efforts had previously involved transferring medical records and, “finding an adult provider, with significantly less focus on equipping adolescent patients with the tools and skills needed to successfully manage their health care needs.” Seeing this gap, Dr. Maddux and a dedicated transition task-force set out to create a holistic transition program that managed the clinical issues while taking lifestyle matters and family perspectives into account. They started by interviewing each of the pediatric gastroenterologists (GIs) on service to ensure physician engagement in the project and to capture their unique perspectives. They also created a GI roundtable and invited pediatric and adult GIs to have transparent conversations about transition. This resulted in a provider database and helped to dispel some of the myths that pediatric and adult GIs had about each other. The success of the roundtable and the transition task-force’s efforts culminated in the hiring of a transition coordinator and the development of a transition readiness screener for patients as well as educational materials for patients and families undergoing transition. The educational materials were vetted by Mercy’s general parent and teen advisory boards (i.e., not IBD specific) and by parents of children living with IBD.

 

Cue Jamie Hicks – a perfect fit into the role given her nursing background and a busy mom of three, including 10-year-old Colson who lives with Crohn’s. Prior to reviewing the transition materials, Jamie said, “[i]t simply wasn’t on my radar… I think of him growing up and how the disease will impact his future. But I never linked that to him taking over my ‘job’ as the manager of his health care.” Jamie praised the educational materials as “fantastic”, underscoring the importance of a defined direction and plan over guessing and uncertainty. Jamie’s main contributions were adjusting the material’s language, which she believes can have a large impact on how the information is received and understood by kids and families. According to Dr. Maddux, “Jamie brought a much needed patient/family voice to our materials that gave us a unique opportunity to craft our educational materials to meet the needs of families.”

 

Both Dr. Maddux and Jamie reiterate the vital importance of creating space for parents in research projects. Dr. Maddux pointed to the language and format changes as key edits that would have gone unaddressed without parent and patient engagement. Jamie addressed the critical role parents play as the people who most intimately understand their children beyond the clinic by helping to appropriately tailor educational materials and provide ‘behind the scenes’ information about children's motivations and worries. Similarly, they are both passionate about transition being relationship-based and starting as early as possible so the changes in medical responsibility are empowering and fitting for each child and familial situation.

 

We may not have a cure for IBD, but thanks to the insight and persistence of Dr. Maddux’s team and parents like Jamie, it is possible to implement a comprehensive, team-based transition program that prepares young patients with IBD to manage their own care. We can give our patients the encouragement, support, and information they need to ‘ride their bikes’ with strength and confidence.

 

After dozens of tries back in that field on my purple bicycle, I finally pushed off the ground, my feet finding the pedals and my eyes trained on the horizon, newly sturdy and sure of myself, and off I went pedaling across the field as my parents clapped and whistled. It hadn’t been easy, but I did it.

 

And together, we can make sure all of our kids can do it too.

 


Together

I met with up an old friend for tea. As we were standing in line, she asked about my college friends and how they were doing. I started talking about one, and she interrupted, asking, "Is that the girl with Crohn's?" "No," I said, and named another disease. My friend smirked, and said, "Do you have any healthy friends?"

It's an ongoing joke amongst my family and closest friends that, in order for me to know someone, they have to have a chronic illness. To an outsider examining those I have chosen to be 'my people,' it would indeed seem that having an illness is some form of a requirement - the vast majority of my close friends have chronic illnesses. The natural thought is that we're friends because of being young with chronic illnesses, but that is not completely true.

They did not choose me because of my illness, or in spite of my illness, but rather they chose me with my illness. Living with a pediatric chronic illness has been, in my experience, a simultaneous growing up and growing down: the growing up is bumpy and circuitous, while the growing down is shirking off the medical maturity and fumbling to fit in and understand peers without disease. I have several wonderful, empathetic, incredible friends who - surprise, surprise - do not have chronic illnesses, and these people have been unimaginably understanding, supportive, and encouraging. But, in light of a variety of challenges my friends with chronic illnesses have been facing, I wanted to write this post in explaining the beauty of a friendship steeped in chronic illness.

To my friends with chronic illnesses:

Thank you -

For understanding that when I say I'm having a 'bad day,' I'm really not feeling well but trying to be brave. For sending me funny pictures and sweet cards in the mail. For never replacing true empathy with an easy platitude.

Thank you for seeing the strength in my struggles, the determination in my pain, the resilience in my scars. For knowing that I am not my disease, but like a tree with a missing limb, I am whole even if my body is not.

I am better for being your friend - better for sharing my story with you and better for listening patiently to yours. I am so full of everything good because of your willingness to hear me when I'm terrified and upset, to celebrate my triumphs when I push on, to let me have a moment of fear before you tell me I can do anything.

We are not friends because we are sick - it may be how we found each other, but we are friends because we are puzzle pieces that click together, choruses to the same song, hands that were meant to hold the other. I look at you and see you, not your disease, not your pills, not your doctors, not your prognosis. We see one another when sometimes everyone else can only see the mask.

I hurt when you hurt, but I will always be there for you, just as you are there for me.

This is a thank you, a celebration, a marking of how much your friendship means to me. Words will never do this justice, but I wanted to try.

For now and for always, thank you.

Jennie


Step up

I have been meaning to write this post for a while but the thought of sharing my voice felt a bit self-glorifying so I held back, until now.  I realize that I may not be the only one holding back, so I decided to open up about getting involved in case others are feeling similar.  That is, wanting to give back maybe, somehow, not certain how, but also not ready to or feeling any desire to rally a crowd or become a spokesperson of any kind, any time soon.

 

I was diagnosed with ulcerative colitis 11 years ago, at age 16.  I have worked on research studies coincidentally linked with IBD since I graduated college and am currently working alongside a lot of big-shots in IBD research while getting my Master’s in counseling.  Speaking about my disease comes easily, trying to create a buzz about it does not.

 

For months I have been contemplating why I am not more interested, more invested in becoming more involved.  But what I also have been questioning is what it means to be involved and at what level it is acceptable.  Whether it is participating in a research study, writing about your experiences, sharing your story with a friend or broadly campaigning for awareness; being involved with a disease that has debilitated you in some way can seem daunting, overwhelming.  Why would I want to think about my disease any more than I have to?  Doesn’t thinking and stewing about this condition only make things worse?  Sure it can.  So if getting involved doesn’t feel right for you, at this time in your life, at this stage in your development or at this phase of your condition, that is OKAY.  Getting involved should make you feel comfortable and empowered.

 

This reminds me of the times I practiced meditation when I was really sick.  I did not focus on or contemplate my disease, no.  Instead, I visualized light radiating above my head where I pretended I was HEALTHY, that I was healing. I did better forgetting I was in pain, had chronic bloody diarrhea and had to eat a limited diet.

 

A friend recently shared an article with me called Engagement in advocacy: Not an all or nothing thing.  This resonated with me.  People considering getting involved come from all walks of life. They might be sick or in remission, they might be emerging from or deep within depression, they might be moving on with their lives happily and healthily and never looking back at the disease, they might be graduating from high school, college or grad school, they might be committed to another cause (just as worthy), they might be mothers of other children, grandparents, friends, doctors or researchers who wish they could do it all but don’t have the time or resources, they might have more skills and resources or less than others, and they might have limited or unlimited availability for whatever reason.

 

No single situation or story is the same.

 

A spectrum of ways to be involved, which encourage and empower every person at any stage to jump in, will welcome more people into the fold and build a community that represents everyone’s uniqueness, as well as our commonalities.

 

I encourage each person to consider what makes them comfortable. Your voice, your experience, your time has value however you choose to share it.

 

[Editor's note: This post was shared by Elizabeth Monti Sullivan. Liz works at the James M. Anderson Center for Health Systems Excellence leading efforts toward establishing a mentoring program and coordinates health care innovations like Passive PRO as part of C3N Project team.]


This is not how it ends.

Thumbs up and thumbs down indicating conflicting opinions

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.


Words Into Action

It was a Monday and I had a migraine.

The hospital room was grey and muted.  I was on my side with my eyes closed, trying to wish away the headache. A suave, slicked-hair doctor – the new GI for the week – strode into the room, the curtains whooshing slightly with his arrival, followed by his resident, and my mother stood up from her chair. They all stood at the foot on my bed, a semi-circle, as I pulled my legs closer to me and rolled onto my back.



 


Tyler Moon for Empowered by Kids

Empowered by Kids Featured Patient Tyler MoonHave you ever felt like the Internet holds a vast amount of both the scariest and most wonderful information all at the same time?   Do you feel like when you’re searching for “good” news, hope or inspiration the only things you find are stories of darkness or bad news?  Well, there is a brand new place to share inspiration, hope and great stories from people just like you and me - who live with IBD.  This website also has a collection of trusted resources to visit for the most up-to-date information on Crohn’s disease and ulcerative colitis.

It’s called Empowered by Kids! Here is the link: http://empoweredbykids.com so you can check it out if you haven’t already. On it you’ll find stories and videos by kids and parents from around the country and the UK sharing their amazing IBD journeys (my story was just featured on December 8th). These  bring to light the many wonderful things these families have done to make a difference in the lives of others with IBD.  Empowered by Kids has given these patients and family members a place to share their voices, and to share the many ways we all can help make things better and easier for others with IBD.

Think of the number of people that could be impacted by each story! Wow, doesn’t that make you want to send your story in?  Wait, there's more!  Some of the stories on this site were collected and printed in a book especially for newly diagnosed IBD patients and families – to remind them that they are not alone. The Book of Hope is now being given out at ImproveCareNow centers. It’s all part of the amazing work happening within the ImproveCareNow Network. Together, we are making a difference for all patients and families impacted by IBD.

If you know someone who would like to share their story on Empowered by Kids, here’s the link to the online contact form http://empoweredbykids.com/our-mission/contacts. They can also send an email to [email protected] and share their story that way too.

[Editor's note: Tyler Moon is currently a C3N Project Patient Scholar and member of the ImproveCareNow Patient Advisory Council. He asked us to share this post on his behalf.]


Who is an advocate?

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.


IBD flare...a lesson in humility

Flare. It’s a common, yet dreaded, word used by IBD patients.

 

You would think that being a Crohn’s patient for nearly ten years, it would be a word I’d be quite comfortable with.   Or at least a word that I use when describing my medical history and disease symptoms to others…but, ironically, it’s not.

 

I’ve always been one to downplay the severity of nearly everything going on inside my disease-stricken body.  I’m sure many of you know just what I’m talking about.  These responses may look all too familiar to some of you…

 

“Today was a relaxing day…I got some good reading done!”  (While this is true, I strategically left out the part about doing 90% of that reading while in the bathroom.)

 

“Yes I had surgery last week, but no worries it was pretty minor”.  (Is there really anything minor about months and months of recovery time?!)

 

Or, my personal favorite…“Yeah, today was a good day!”  (Did I mention my “day” began when I was finally able to drag my fatigued body out of bed at 4 pm?)

 

While I pride myself on having a positive attitude and outlook most of the time, I’ve found that this positivity is also sometimes a warning sign that simply says one thing…denial!  My ability to seemingly immediately emphasize these “silver linings” is a way in which I deny what is actually going on with me to others, but more importantly, to myself.  Because let’s be real, who really wants to admit the reality of all that a flare entails!

 

And that, my friends, is why the word “flare” is not a common word in my vocabulary and I assure you it is not because I have been in remission for most of, or even half of, the last ten years.  It is because I don’t want to admit it.  For some reason, in my mind admitting this kind of thing threatens my ability to come up with endless silver linings and possibilities.  However, seeing that I have spent the majority of my time over the last four months between my bed, the bathroom, and the couch, I think it is safe to say…I am in a flare.

 

Saying those simple words is incredibly humbling for me.

 

Going from being a super independent 20-something to living back at home with my parents, needing help with the most basic of tasks is a huge lesson in humility.  I like to think that I can do it all, I can handle it.  And most days, that is absolutely true.  But sometimes, sometimes doing it all on your own isn’t necessary, and sometimes is just simply isn’t possible.

 

It is times like these in which I have to set aside my pride and rely on the support system around me to keep me going.

 

I must swallow my pride enough to reach out to the friend or family member that has said “let me know if you need anything” to say, I just really need someone to do a few loads of laundry for me, or could you come over this afternoon just to keep me company.

 

Yet one of the most humbling experiences I’ve had while being in a flare is that, quite simply, people can have a way of surprising you in the most unexpected ways.

 

Maybe the surprise comes when waking up to a chai tea latte (soy of course J) sitting on my night stand left there by my best friend stopping in as I was napping.

 

Perhaps it occurs when opening a package full of get well letters from a class of third graders, covered with drawings of the most adorable penguins because their wonderful teacher, and my dear friend, told them they were my favorite.

 

Or maybe it’s receiving an email from an IBD friend that simply says hey, I met another Crohn’s patient who is having a hard time and I think you’d really be able to help her.  And in that sentence, those few simple words, my sense of purpose is restored.

 

Humbling.  All of it is so incredibly humbling.

 

So here’s to being thankful for so many lessons in humility, and hoping that remission is right around the corner. And if it’s not, maybe it’ll be around the next one.


The PAC wants you...to email them

Jennie David and Sami Kennedy are co-chairs of the Patient Advisory Council (PAC), having taken over for the group’s founder and former chair, Jill Plevinsky. The PAC is a group of young, passionate and motivated patients with IBD who draw from their own personal experiences with chronic illness to educate and enlighten clinicians, researchers and other collaborators on how to design health care innovations that are making it possible for patients (and families) and their care teams to communicate more meaningfully with each other, to work together to investigate lifestyle changes that might have an impact on health and to truly share in decision-making about care – with the ultimate goal of getting more kids healthier, faster (and keeping them healthier longer).

 

Sami and Jennie – affectionately known as Gutsy 1 and Gutsy 2 or Jami – are not new to us. They have been active members of the PAC since early 2012 – when, without realizing it, they ‘jumped on the fast-track to super high-level engagement’. Since joining the PAC they have been engaged with ImproveCareNow and the C3N Project – and are well-known for their stirring contributions to LOOP.  Recently their role has deepened as they have been co-developing educational content and delivering presentations at Learning Sessions (our Fall 2013 Learning Session was approved for a record 14.5 CME and 15 CNE credits for eligible participants), participating on innovation teams and engaging with centers 1:1 to encourage patient involvement network-wide. They do all this on top of already full schedules – because they know, first hand, how transformative this work is.

 

It is transformative not only for ImproveCareNow and the C3N Project – which are collaborating to change the face of chronic illness care through innovative engagement and self-tracking approaches like the PAC and Passive PRO – but also for the patients themselves. As Jennie and Sami explained at the Learning Session earlier this month – “we weren’t always like this”. Starting as young kids getting handed diagnoses they didn’t ask for – Sami and Jennie have transformed into outspoken patient leaders; mentors and advocates for others living with IBD. It is their hope that many more will join them and that together – with a strong, sustainable culture of patient engagement through the PAC - they will continue to inform, educate and co-design a better way to care – one that takes into account the ‘person inside the patient’ and embraces the unique knowledge and perspective (and yes, expertise) that each patient brings to the table.



Here are Jennie and Sami’s reflections on ImproveCareNow and next steps for the PAC following the Learning Session

 

As patient advocates, there is something wonderfully refreshing about ImproveCareNow's Patient Advisory Council (PAC). It is unique in the sense that from the network leadership, all the way down to each center, the work of the PAC is celebrated and integrated in ways that outshine perfunctory patient involvement. PAC members are not involved because we have to be, we are involved because a) we want to be and b) care teams want us to be.

 

Enthusiasm and sincerity are synonymous with ICN, and yet the network is still an exemplary role model for movers and shakers in the pediatric chronic illness world. And so it seems only natural that the PAC emulate the inclusive, collaborative, out-of-the-box thinking as we build our council into an action-oriented, accessible group of patient advocates who actively engage in co-designing health care innovations, in brainstorming new and better ways to engage more patients, and in supporting the incredible efforts of everyone in the network.

 

The PAC strives to be a thoughtful and accessible resource for ICN care centers - as mentors to patients all the way through to colleagues in research. Over the next six months we plan to strengthen the council in the following ways: firstly we aim to develop and pilot, with the help of several centers, an effective recruitment strategy to welcome energetic and passionate patients into the PAC. Secondly, we believe it is important to create a community and culture of engagement and ownership amongst our PAC members. This is both to ensure members of the PAC are empowered by their experiences and that the council continues to grow and sustain itself. To that end we believe we must develop a sustainable succession plan.

 

As the co-chairs of the PAC, we remain extraordinarily humbled and thrilled by the endless encouragement and opportunities we have been afforded, and are admittedly a bit blinded by the spotlight. Nevertheless, we are honored to serve as patient advocates and work as part of this incredible network. As always, we will encourage you all (until we're blue in the face or there's a cure for IBD, whichever comes first!) to email us with questions, comments, suggestions, or anything you can think of! Like we said at the Fall Learning Session, we want to be your resources, your cheerleaders, your brain-stormers, and your colleagues.

 

You can always reach us at [email protected]

 

 


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