ImproveCareNow Ibd


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.


Why is being part of my center's QI team important to me?

For many reasons. But one that comes to mind right away is that we didn't get to opt-in to this disease. We are in - all in. Over the course of this journey, we have had to learn to navigate many paths. We've experienced phone call processes, waiting rooms, treatments, and planning around a disease that at times consumes our thoughts and actions. We didn't navigate these paths for a higher purpose or with greatness in mind. We did it because we had to. And on some many occasions, the work of navigating was hard. We found ourselves exhausted by the tasks and fearful of the next step.

 

And then suddenly, there was this opportunity. One that I could choose. One that was organized around the idea of improvement.  A place to use my insight and experiences - what had become my expertise as a parent of a chronically ill child - to add value and depth.  Because, you see, I NEEDED to have a place to use this knowledge I now have. I desperately wanted my work of navigating and fighting to matter, not just for my son...but on a larger scale.

 

The first time someone on my team asked my opinion or my thoughts...the first time I came to a Learning Session and someone asked me to weigh in on a conversation, our journey became easier...because it was needed.


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]

 

 


Not Again?

Gatorade’s slogan reads, “Is it in you?”

 

“Yes, I have mutant Gatorade sloshing though my organs like a snowplow clearing everything in its unfortunate path.”  As I am writing this I am caught in a “not again” moment. A “not again” moment is a repeated, tiresome, irritating event. Like when a Kindergartner smashes their second glue stick, when coffee splotches your clothes after the second changing, and when your major league team cannot secure the win after the second consecutive error.  Life also houses more serious “not again” moments. Like when children are denied love and respect again, when health fails again, and when people go hungry again. The feeling of an empty rumbling stomach, for me is like rolling my foot over a tree nut as the slow pressure begins to build and produce an uncomfortable type of pain. This is only one part, as my “not again” moment involves another procedure that prevents me from eating for a day.  My brain cannot fathom the pain of others' “not again” perpetual hunger.

 

I’d like to tell Gatorade that what is NOT in me right now is solid food.




Crohn's Walk 2013 Crohn's Walk 2013

I’d also like to thank ImproveCareNow for the goal of being healthier together. This movement, to me constitutes fewer “not again” moments in the journeys of many peoples' health.  Working together improves outcome and prevents ailments that cause people to find themselves facing “not again” moments.  If Gatorade were to interview athletes they would probably answer, “Yes, it is in me!" Together with ImproveCareNow we can respond in kind, with the attitude that it is in us to work together and help diminish “not again” moments.


Why I'm proud to be part of ImproveCareNow...

Dellal George Dellal | Program Manager

As the ImproveCareNow program manager, my role is to coordinate and align all the people who tirelessly work to make ImproveCareNow the leading learning health system in the world.

 

I stumbled across ImproveCareNow in 2009, when I was looking for an opportunity to use my project management and process improvement background to help improve the healthcare system.  I quickly became hooked. I’m writing this post to express some of what inspires me about our work and makes me so proud to be a part of ImproveCareNow.



Sharing:

 

John Wilbanks once said to me “people want to share, the problem is that our systems are set up to restrict and disincentive sharing”. To give an example, two clinicians from different ImproveCareNow centers wanted to collaborate on a handbook to help kids better manage their IBD. However, before they could share their drafts with each other, lawyers from their respective hospitals spent several months going back and forth on copyright and branding issues. This is a classic example of what we call a ‘transactional cost’. These costs make sharing almost ‘not worth it’ and prevent the kind of collaboration that is necessary to change healthcare.

 

One of the ImproveCareNow Network’s aims is to reduce and eliminate transactional costs by designing systems that reward sharing and more importantly make it easy and convenient. A great example is the ImproveCareNow Exchange (picture Pinterest for healthcare). This internal collaboration platform has been developed by a team of volunteers to make it easy for patients, parents, clinicians and researchers to share and discuss tools and ideas to improve chronic illness care for kids with IBD.

 

Colletive Intelligence_PCORI_SlidesTools to improve healthcare are almost always ‘non-rivalrous’; meaning just because one person uses a certain tool doesn’t mean it won’t work or be helpful to someone else. Let me paraphrase Peter Gloor who described it nicely in his book “CoolFarming”: Two people walking opposite directions on a path meet and decide to give each other a dollar, as a result they each walk away with a dollar. The next day the same two people meet and this time decide to share with each other an idea they’ve had to improve healthcare, as a result they each walk away with two ideas to test.

 

At ImproveCareNow we have brought together hundreds of patients, parents, clinicians and researchers and enabled them to share tools and ideas. As a result they are all walking away with many more ideas and tools to transform care. This is the power of sharing.  Our collective intelligence and ability is so much greater than our individual intelligence and abilities.  It is this kind of power that is necessary to tackle the thorniest of our nation’s challenges: How do we provide our children with the care they deserve?



Technology:

 

I recently saw the following tweet:  “How do you know you work in healthcare? There’s still a fax machine in the office and moreover it’s used”.  It really summed up a lot of the technology challenges healthcare is facing.  We are trying to solve today’s problems and improve today’s care using outdated technology. No wonder we’re frustrated! At ImproveCareNow we’re fixing that.

 

ImproveCareNow has developed a data-in-once registry (called ICN2) to harness clinical data collected routinely by our clinicians at the point of care.  These data are enabling us to research which treatments work best so we can feed that information back to our centers and they can improve care for their patients.  Additionally, we’re using cell phone apps and SMS messaging to collect patient data which helps patients understand their IBD better and allows clinicians to work with them to customize care. And this is just the beginning. We’re working towards a technology http://ginger.io/join/c3ninfrastructure that combines clinical data and patient data; a system in which patient health can be monitored remotely and disease flare-ups predicted and prevented. That’s the promise of technology and our future healthcare system.



Learning from Variation:

Fred Trotter writes “when you’ve seen one medical practice, you’ve seen one medical practice”.  Each ImproveCareNow center operates differently; each has its own unique culture, processes and systems.  While this variation presents challenges, it also presents a huge opportunity.  Quality Improvement teaches us to embrace and learn from that variation. What does care center A do that care center B doesn’t? What impact is it having on patient outcomes?  Where is the positive deviance (better solution)? How can we spread it?  These are the questions that our team asks every day, and embedded in their answers are the reasons we have been so successful at improving clinical outcomes.

 

I could keep writing. But this post is long enough already.  I’ve tried to convey some of the top things that make me so excited to get to work every day. But, the thing that inspires me the most are the stories I hear from our patients and families. They really are heroes - sharing their experiences, ideas, time and energy so that together we can improve the care and outcomes for all kids with IBD.


Collaboration in healthcare. Why?

[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.]

 

The multi-disciplinary team at UNC Chapel Hill shows us what collaborative healthcare looks likeWhy 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 15th?

 

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.


The Kindness Project

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 yr. old me

Moriah at Crohn's WalkDearest 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.


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