Circle eNewsletter | 4 Dots Logo
By IMPROVECARENOW for Patients & Families living with Crohn's disease and ulcerative colitis
May-June 2013

Featured Article
April 2013 Rem Rates

Featured Stories
What's new?  What is the buzz in our community?  News, media, blogs, videos, and more.

Inspiration: #ICNLS Quote  
Spring learning session was energizing and the parents and kids made me feel like we can't work fast enough!! So proud to be part of this amazing work!
- Teresa, Seattle Children's

TIP: Ostomy & Swimming
Recently, I've read a couple of articles and posts that said people with ostomies can't swim. People with colostomies and ileostomies can swim; I have an ileostomy and I swim every chance I get. Some people choose to wear a one-piece swimsuit or a t-shirt over their swim trunks, but more people are deciding to wear whatever swimwear they like."  - Cinda
Learn more>> 

Innovation: E3 Healthcare 
Patient Activation is also known as E3 - Engaged, Empowered, Electronic - Healthcare.  The automated tools are designed to make  clinic visits more productive and help patients and parents share the decision making with the care team. This C3N Innovation is being tested at six ImproveCareNow centers.
Learn more >>

News: Lifelogging App 
MIT Technology Review writes up - smartphone technology that lets your doctor know when you're headed for trouble. is the behavioral health data start-up that powers the C3N Project innovation called Passive PRO. SuperTracker

Why use a food journal? 
Individuals with IBD can
keep a food journal to track symptoms and associations with foods consumed.  The SuperTracker can help patients track what they eat each day, and how their diet measures up to a recommended diet.

Self Management Handbook 

Uses for the SMS Handbook
I like the action plan on page 27 for our teens. And I often print out the "adherence hints" on page 33, laminate them, and tell the kids to post them on their refrigerators!

Office Visit Forms (pages 7-13) During parent mentoring visits I always get lots of medical questions and this gives me an opportunity to use that form to teach PVP (Pre-Visit Planning) from the parent/patient perspective.  
Websites (pages 104-105)  
I advise parents/patients to stick to the listed sites and others that those sites link to.
PAC Logo

The PAC is a diverse group of young adult IBD patients with different interests and skill sets. Although we all share a common goal, we value individual strengths! You choose how you'd like to contribute.   


What Can You Do As a PAC Member?

* Give patient insight to research studies

* Contribute meaningfully to the development of innovations to benefit current and future pediatric IBD patients

* Gain valuable experience interacting with physicians, researchers, and other health professionals 

* Share experiences and the patient voice through LOOP and Twitter!


Interested?  We'd love to get to know you!  Contact Jill Plevinsky, PAC Chair, at  

Join Our Mailing List
"If you want to go fast, work alone; if you want to go far, work together."

ImproveCareNow began in 2007 as a test to see if clinicians and quality improvement scientists working together could get better outcomes for kids with IBD. It worked, and today ImproveCareNow is an established learning health network that has raised the remission rate for our patients from 50% to 77%. With 16,000 patients at ImproveCareNow centers, that means 4,300 patients more in remission.


"Until parents and patients are true partners, you can't get the best outcomes."

We believe that we can do even better than 77%. One of our biggest opportunities for continued improvement is to effectively engage parents and patients in our work. What does this mean? It means giving parents and patients a seat at the table, a voice on the team and utilizing their unique knowledge, skills and perspective. This is beginning to take shape with:  the establishment of the ImproveCareNow Patient Advisory Council, the Parent Working Group, parents on QI teams, parents as co-designers of Learning Sessions, tools to help patients get the most out of each clinic visit, tools to help patients take control at home and give themselves better care, and more.  A new era is unfolding.  Stay tuned.

  RBC High Res Signature


LS13S Photo banner
Planning and executing a two-day Learning Session for 178 Quality Improvement (QI) Team members from 46 participating care centers and assorted ImproveCareNow collaborators is always an exciting challenge. As one of the key planners of Learning Session content, my work starts months in advance. It is critical to take into account teams' and individuals' different levels of QI expertise, needs, and priorities. The Learning Session must ultimately be a balance between hard work and learning, discussion and team-building, and even some humor and fun. Believe it or not, I find it to be less daunting than it could be. Why? Because I am part of a great team and we share the work.


The difference between a good Learning Session and an extraordinary one comes down to a team effort across the entire Network. I consider each of our participating centers and team members to be Learning Session co-designers. Co-designers from the time we begin to brainstorm an agenda, to when we invite presenters, all the way through to the opening remarks at the Learning Session reminding everyone that we are all teachers and all students and that, as always, each of us needs to "share seamlessly and steal shamelessly" so we can work together to improve care for more patients.


In reflecting on our April Learning Session, which many stated was indeed the 'best ever', these to me are key examples of how our team came together to create a truly unique and inspiring weekend:   

  • With each Learning Session, the diversity of participants is growing. ImproveCareNow knows that in order to get the best outcomes we must involve parents and patients in the work. We are thrilled that 18 parents and 3 patients were able to join us in April!
  • Several sessions were planned with parents and patients. A well-attended breakout session on self-management support focused on adherence and featured in-person and video presentations from PAC members.  Not only did they present, but they co-designed right alongside the QI consultants, clinicians, and researchers. Imagine if every talk you attended about improving care for kids with chronic illnesses actually incorporated the patient voice from the very beginning!
  • Guest faculty speakers included Chris Forrest, MD, PhD - a nationally recognized comparative effectiveness researcher - who told us how we can and must take advantage of the extraordinary data that is available in our ICN2 registry to teach others how to provide optimal care for kids with IBD. The REACH replication study, which Forrest co-authored, was presented orally at Digestive Diseases Week earlier this month. 
  • We designed work sessions for professional groups that are represented on core QI teams. Research/Improvement Coordinators, Nurses, Physicians and other providers met in small groups, spent time discussing issues relevant to their work, and most importantly, began to develop action plans for becoming QI leaders within the Network.
  • We launched a new QI support and curriculum structure called the ImproveCareNow Learning Labs. Each learning lab consists of seven to eight care centers with size, geography, organizational structure, or focal areas in common. These labs will aim to capture the close-knit, collaborative feeling that has become more challenging to maintain as the Network has grown. Labs will have small group conference calls, interact virtually to share ideas, and report back to the Network about the usefulness of this approach.
  • We ended the session with inspirational calls to action from our parent and patient partners. They reflected on the importance of the work that had already begun and challenged us to go even further, faster. I cannot begin to describe what it was like to be in a room full of clinicians and other colleagues who were moved to tears...and to action!   Read the speech that made everyone cry >> 

Planning Learning Sessions is a part of my job, but I am not exaggerating when I say that it's a joy and that I learn so much from everyone involved. As we look toward our Fall Learning Session (which is just about four months away!), we will continue to build upon the partnerships formed at the April Learning Session; engaging patients, parents, and QI team members in planning earlier and in even more meaningful ways.


In our Learning Session evaluation, we always ask participants "What delighted you about the Learning Session?" The following responses capture what an excellent Learning Session feels like, better than I possibly could and so I'll leave you with these words.
  • "The energy!  And the meaningful inclusion of parents & patients in the weekend."
  • "Such a dedicated, motivated and helpful group of people. So lucky to be part of this amazing group!!"
  • "That FINALLY nursing issues were addressed.  We are at the front lines with these patients.  We are often the ones who inform the physicians of problems or concerns"
  • "The entire weekend was a joy!! Initiating the small groups is an exciting new adventure."
Sarah Myers, MPH, RN
Lead Quality Improvement Consultant for the ImproveCareNow Network
Enteral Therapy as a treatment for Crohn's disease

Enteral therapy refers to providing nutrition as a formula rather than by eating a regular diet. Enteral therapy has been shown to be effective in inducing, and perhaps maintaining, remission for pediatric patients with Crohn's disease. Enteral therapy does not have the side effects seen with drug treatment, and can improve growth, unlike corticosteroids, which have many known side effects. Although used very little in the United States, enteral therapy is commonly used abroad, including many European countries and Japan.


Over the years, several methods of administering enteral therapy have been evaluated, leading to variation in treatment. In 2012, the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) formed the Enteral Nutrition Working Group to review the use of enteral nutrition therapy in pediatric Crohn's disease, which summarized previous research and offered recommendations for physicians.


Historically, enteral therapy was given through a feeding tube, and this is still done at many centers. However, drinking the formula is also an effective option. Studies have used both specialized nutrition formulas (in which the protein has been broken down to into smaller pieces) and non-prescription over-the-counter formulas (in which protein is not broken down). Both approaches appear to be equally effective, an important finding since over-the-counter formulas taste better and are less expensive.


The majority of the research has shown that enteral therapy is effective when taken as the sole source of nutrition (that means the patient can't eat any food), and this approach was recommended by the NASPGHAN Enteral Nutrition Working Group. However, recently a study published by Children's Hospital of Philadelphia showed that enteral therapy protocol is still effective when a small amount of food (less than 20% of the calories) is taken at the same time.


The way enteral therapy works is unclear. Theories include that it may help to provide the body with important nutrients and better overall nutrition, eliminate an unknown dietary substance that causes an immune response, or alter the bacteria found in the intestines.


A perceived barrier to enteral therapy is that the treatment may be demanding for physicians, families, and patients. For example it may be difficult to start, expensive, create a need for a feeding tube, or be displeasing to patients. Nationwide Children's Hospital is developing and testing a simple enteral therapy protocol which could be started very quickly and could be used at other GI centers. They plan to work with families and patients to reduce the perceived barriers via education on cost issues and payment options, and by developing a mentoring program. If successful, the protocol could significantly decrease the number of newly diagnosed patients with Crohn's disease who are initially treated with corticosteroids. Stay tuned.


Jen Smith, MS, RD, LD, LMT, Clinical Dietitian

Nationwide Children's Hospital, Columbus, Ohio

LOOP Updated Logo
Michael Seid's ImproveCareNow Story
Things aren't perfect, but my daughter has been able to bear the burden of Crohn's more lightly, in large part because of the way that ImproveCareNow has enabled us all to be more active partners in helping her stay healthy... Read on LOOP >>

TIP:  Search for posts tagged "Story of Self" or click here to read what ImproveCareNow means to others.   Would you like to share your story too?  Email ImproveCareNow  
Body Image & IBD
PAC members pull from their personal experiences and list some ways that families and care teams can help kids develop positive images in the face of IBD ... Read on LOOP >>

TIP: Follow LOOP and get an email notification with each new post! Here's how >>

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CIRCLE is an official publication of IMPROVECARENOW  | May-June 2013