ImproveCareNow PFAC


Sometimes you don’t know what you’ve got till it’s gone…


The announcement from Daniel McLinden that the ICN Exchange was back up.

 

Recently, the ICN Exchange needed to undergo maintenance unexpectedly for two days. Some people in the ImproveCareNow Network probably noticed it more than others. I know that as someone who has come to rely on it to keep up with what centers are working on and looking at, I was keenly aware of its absence.  So you can imagine how thrilling it was when it came back online!

 

Now that the Exchange is back up and running (and better than ever - with plans and resources in place to prevent such outages in the future!) it occurs to me that even a quick glance at the Exchange clearly shows the richness, diversity, vibrancy—and the multifaceted dynamics of our community.

 

When I glanced at the Exchange today this is what I saw:

 

Children's Hospital of The King's Daughters' DIGMA model demo video from the Spring 2014 Learning SessionImproveCareNow centers, like Children's Hospital of The King's Daughters, jumping in and collaborating with parents, patients, and other centers to make sure that we are all learning together!
Call for clinicians to sign up for a focus group to dicuss what has worked and what hasn't worked when trying to get patients and families involved in QI work at ImproveCareNow centers.

 

Opportunities that highlight how much we really, really want and need to learn from each other so we can collaborate even better!

 

The first ever announcement for a ImproveCareNow Dietician webinar Multidisciplinary partners, like the RD group, are staying connected with each other and getting organized so they can The new online 90 day goals tracker for ImproveCareNow centers to track and monitor their Improvement project goals and progress quarterlytake on projects that will build their visibility and leadership in ImproveCareNow.

 

ImproveCareNow QI teams are becoming even more accountable and transparent in their day-to-day QI work.

 

The Parent Working Group of ImproveCareNow is now setting and working on 90 Day Goals and in the spirit of transparency is sharing them with the whole NetworkParent Partners are setting their 90 day goals, tracking their progress and keeping the Network informed!The Patient Advisory Council request to ImproveCareNow participants to co-produce an Ostomy Toolkit for patients with permenant or temporary ostomies.

 

And finally, amazing patients around the country are teaching us more and more every day.


 

And that is just a quick glance! So thank you to everyone who has been a part of helping us build this vibrant community. I, for one, can’t wait to see where the community goes next!



The ICN Exchange is an internal knowledge-sharing platform that the ImproveCareNow Network uses to communicate, collaborate and innovate across the miles. Clinicians, Researchers, Patients, Families and Improvers are able to log into the ICN Exchange and share seamlessly and steal shamelessly!  The ICN Exchange has enabled ImproveCareNow to extend our “all teach, all learn” collaborative approach to medicine far beyond our monthly webinars and twice-annual Learning Session. It allows us to identify ideas and best practices in pediatric IBD care and introduce them into the care delivery process much faster—improving care for our patients now.


Why?

Why?

I ask myself this question as I cry at night.

Why is my child sick?  Why has he been diagnosed with this disease?  Why so young?

Why?   

I ask his doctor this question at his appointment.

Why does it not get better with treatment?  Why so many medicines? Why surgery?

Why?

I ask this question to God as I pray.

Why does this child suffer like this?  Why does he have this cross to carry? Why him?

Why?

No one will ever forget the day that their child was diagnosed with Crohn’s disease or Ulcerative colitis.  From that point on, everything becomes “before and after.”  When you have a sick child, all else seems to stop.  Your world, your life, your very being centers around helping him or her; all else falls to the side.  At least it did in our home when Jimmy was diagnosed.

My name is Liz.  My husband, Jason, and I have three sons.  Our youngest son, Jimmy, was diagnosed with UC in October of his kindergarten year.  We had a very rough year and a half trying to get him into remission.  Currently, he is a happy, healthy eight year old with the help of Humira.

Now our goal is to build up what was lost during those years of active disease.  We are checking off delayed milestones – riding a two wheeler, trying sports, as well as physical milestones like delayed growth and loss of those precious front teeth.  These diseases affect the whole person and the whole family in ways it is hard for those who have not lived it to comprehend.  It is our role as parents to help shift the focus off of why and onto how - how do we build up our children?

In October 2013 I attended my third ImproveCareNow Learning Session as the parent representative for Riley Hospital for Children.  It is the development of these “how’s” that inspired me to get involved with ImproveCareNow and with my care team at Riley.  Not only do we want to understand how these children get this disease and how to treat it, but I love that ImproveCareNow focuses on other how’s - like how to achieve a higher remission rate, how to increase adherence and how to transfer children successfully into adult care.

At the Fall 2013 Learning Session there were twenty parents in attendance.  As pre-work for the session, the parents were asked to answer two questions:

What is your vision of improved care?

What does pre-visit planning with your child mean for you?

Parents at the Fall 2013 ImproveCareNow Learning Session completed pre-workThe objective of asking parents to answer both these questions, and our attendance at the Learning Session, was to give perspective on the whole picture of these diseases.

[Editor’s Note: Liz D is the mom of a three boys.  Her youngest son was diagnosed with Ulcerative Colitis at age 5.  She volunteers her time as a parent representative on the Riley Hospital for Children Parent Mentor Group, where she is an advocate for all families with IBD receiving care at Riley.  A mechanical engineer by trade, Liz has “retired” and loves her role as a full time wife and mother.  This has also allowed her to pursue her love of all that is artistic and creative.  Over the past 12 years, she has taught both photography and memory preservation classes to both adults and kids.]


ImproveCareNow to Publish CIRCLE on IBD Transition

CIRCLE eNewsletter is published by ImproveCareNow for Patients and Families living with IBD

The December issue of CIRCLE will be published on Tuesday November 27th.  The eNewsletter, which is published by ImproveCareNow for patients & families living with Crohn's disease and ulcerative colitis, will feature parents talking about transition points, supporting each other and the importance of caring for their kids now.  We'll include some tools and resources on transitions too.  And as always, you'll find links to trending IBD topics from the past month, up-to-date ImproveCareNow remission rates and more.  Don't miss it. Sign up to have CIRCLE delivered to your inbox today.


What We Wish Our Parents Knew

Mother and Daughter not talking

At ImproveCareNow’s Fall Learning Session, the Patient Scholars and parents had a special breakout session together. At the parents’ request, Jennie and I (Sami) have co-authored a list of What We Wish Our Parents Knew navigating IBD through our teenage years:


This is it

After years of planning for transition, this is it. On Monday, my son will borrow a car from a classmate, drive himself 35 miles from his university campus to a Dallas hospital, use valet parking for the first time, check in at an infusion center, and get his Remicade infusion, alone, for the first time.

He’ll be far from his Ohio home and far from me. This will be his 53rd infusion; I’ve been there for nearly every one.


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