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By IMPROVECARENOW for Patients & Families living with Crohn's disease and ulcerative colitis
remrategraphicFeatured Article
June Remission Rate

Featured Stories
Sharing is caring.  If you know someone who would enjoy reading about ImproveCareNow and IBD, please send them a copy of CIRCLE.

The Gutsy Generation
ImproveCareNow is lucky to be connected with a great group of patients who've definitely got guts!  They live with IBD and while some have it tougher than others they all share  the desire to tell their story.  They want the world to know about IBD, and they want to empower every kids to live the life they have imagined for themselves, in the face of adversity.  Check out posts from these inspiring patients on LOOP | blog.  

Compete w/ Crohn's
Carrie Johnson will be representing the USA in the Canoe Sprint: Women's Kayak Single (K1) 200m and 500m sprints at the 2012 Summer Olympics in London, England.  The 200m heats start on August 10; the 500m on August 7.  Carrie is one of several inspirational athletes who has chosen to share her story.

"No one should feel bad about having Crohn's.
-Carrie Johnson 

Get Involved with ImproveCareNow and the C3N Project

Featured Article

Raise your hand if you want to Join Us at our Fall 2012 Learning Session in Chicago.

ImproveCareNow would like to invite parents and guardians of children with Crohn's disease and ulcerative colitis, being treated at a participating center, to join us at our Learning Session.   There are some restrictions that apply and if you are interested in coming to learn and share with our Network, we ask that you please email us

Useful link: ImproveCareNow Families
Track Your Health Data
Watch a video about the C3N Project's partner - who are working with ImproveCareNow patients to collect data using a smartphone.  The goal of this testing is that will develop an app that can help predict IBD flares before they happen.

Interested?  Learn more  
Want to connect with a great group of patients who live with IBD? Join the Patient Advisory Council, make new friends and work to ensure that pediatric IBD care is the very best it can be. 


for info & to connect!
Welcome back to our CIRCLE.  This month we are getting back to basics; looking at the foundation of Quality Improvement and data that drives the work ImproveCareNow is doing.  We will loop you in on tools and methods we use to improve the care and outcomes of children and adolescents with Crohn's disease and ulcerative colitis. Keep reading to learn how patients, just like you, are helping us succeed!
 Richard Colletti | Signature 1


In the Loop

A Model for Improvement

In 2007, when ImproveCareNow was just getting started, a small group of pediatric gastroenterologists came together around the idea that they could use Quality Improvement (QI) to improve the care and outcomes of children and adolescents with Crohn's disease and ulcerative colitis.


The doctors began by asking themselves three fundamental questions:  

  1. What are we trying to accomplish?
  2. How will we know that a change is an improvement?
  3. What changes can we make that will result in improvement?

Answering those three little questions is a challenge; especially because of the need to be SMART about the answers.   The answers define a goal or endpoint - we call them aims - and as the acronym SMART would suggest aims must be Specific, Measurable, Attainable, Relevant, and fit into a Time-frame. A Plan, Do, Study, Act (PDSA) form is used in concert with the three questions. The form is a place to track aims, predictions, data and results. The three questions and the PDSA form, together form the basis of the Model for Improvement[1].


The process of answering the three questions and completing the PDSA form, testing the change and collecting data, then analyzing the data and learning from the results is an improvement cycle (Figure 1). Each time a cycle is completed something is learned. The learnings are applied to the next improvement cycle; and so on and so forth.  

ImproveCareNow QI Cycle
Figure 1


Today ImproveCareNow has more than 300 participating pediatric gastroenterologists. Multidisciplinary QI Teams engage these doctors, along with nurses, medical assistants, dieticians, psychologists, improvement coordinators, researchers, and parents in continual improvement cycles. Through these cycles, each center tests and implements small, meaningful changes, which are aimed at improving the care and outcomes of children and adolescents with Crohn's disease and ulcerative colitis.


Quality Improvement is indeed fascinating and its applications in the field of chronic illness care could be talked about at length. But the most fascinating part of this story is that ImproveCareNow could not do QI without you. You, the patients, are the reason we can see the areas that need improvement, test and identify changes to implement, and continually raise the bar for standard of care in pediatric Crohn's and colitis. Your data, carefully collected and expertly analyzed, drives our improvements.

footnote1[1] Langley, Gerald J., et al. The Improvement Guide: A practical approach to enhancing organizational performance. San Francisco: Jossey-Bass, 2009. Print.

Director's Notes

ImproveCareNow believes in the power of data to improve health

As a patient enrolled in the ImproveCareNow program you can expect that your doctor will ask specific questions during each office visit. These will include questions about how you are feeling, your ability to do the activities that you enjoy, and how you are doing following the plan you and your care team made at the last visit. Your responses to these questions are turned into data. Data is just a fancy word for information that can be analyzed to better understand your overall condition and care. Lab results, height and weight, and the names and doses of medication that you take are other examples of data that your doctor gathers. Your data, and data from thousands of other ImproveCareNow patients, are combined and stored in a registry. A registry is a large, secure database designed for housing and studying health data.


The data, when analyzed, tells us a story; and like any good book, we always hope there will be more in the series! The story spelled out by your data shows us where we need to improve and helps QI teams and ImproveCareNow staff measure progress toward improving the care and outcomes of kids with Crohn's disease and ulcerative colitis. Stories have illustrations and ours are usually in the form of graphs and charts. If you look at the dark line on this control chart (basically an elaborate graph) you can see the steady rise in remission rate for ImproveCareNow patients with Crohn's disease from 47% in 2007 to over 75% in 2012 (June 2012 Crohn's remission rate is 77%):


ICN Remission Rate


How ImproveCareNow uses data and QI to improve care

One way ImproveCareNow uses data to improve care is by ensuring there are no major differences in care delivery between individual care providers. Of course the local conditions at each center are going to vary, but we believe regardless of where you receive your care, you should have solid control of your disease. We call this "closing the gap." Gaps-or differences-in care include clinical things like: not prescribing the correct dose of a medication; not regularly measuring height, weight, and body mass index (BMI); overuse of Prednisone; and not ordering potentially useful tests. Gaps also include process issues like: not having a plan for identifying IBD patients who are scheduled for appointments, not preparing for office visits with IBD patients, not collecting or entering data correctly. ImproveCareNow centers receive monthly reports that have been carefully designed to help them identify gaps in the care of their patients.   They then use the Model for Improvement to test changes that will help them close these gaps.


The Model for Improvement is an effective way to identify changes in practice that might result in improvement. Teams test changes-or good ideas-on a small scale to make sure that they work well. That is, they first try things out with one or two patients to make sure that they are on the right track. Changes that result in improvement for a few patients can then be tested with more patients, and later become "business as usual". Test cycles are designed to be quick so teams don't waste time with changes that do not result in improvement.   If a change does not lead to an improvement it can be abandoned. This way only changes that result in an improvement become a part of routine patient care.


Another way ImproveCareNow uses data to improve care is by looking for opportunities for improvement or standardization across the whole population. ImproveCareNow has the largest pediatric IBD registry worldwide. Because we have access to data from thousands of patients, we can identify areas for improvement that can improve outcomes for the IBD population as a whole. A direct result of this improvement work is the ImproveCareNow Model IBD Care: Guidelines for Consistent, Reliable Care. These guidelines are based on lessons learned from data from patients just like you. The Model Care Guidelines are now available for all pediatric gastroenterologists to follow. They are another example of how ImproveCareNow continues to improve the care and outcomes of kids with Crohn's and colitis.

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CIRCLE is an official publication of IMPROVECARENOW  | August 2012