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Enough is Enough

[Editor's note: Alex returns! And he is ready for insurance companies to consider patients' health and feelings before making coverage decisions.]

One of the biggest challenges for a patient and their family is dealing with insurance companies. While insurance companies help families pay for medical care, sometimes it feels like they deny coverage of medications and other treatments for purely financial reasons. A patient is not a number on a page, they are a person with a personality and feelings. Patients with IBD and patients with any other chronic disease suffer. They try to live a normal life while dealing with symptoms; and with the right treatment, they find something that hints at normalcy. When an insurance company denies coverage, patients face the stress of no longer having a treatment that makes them feel better. And the unnecessary stress could cause their disease to get worse.


I do not say this for any old reason; instead I say it because my experience speaks for itself. I am currently taking a medication which is not approved by the FDA for Crohn’s Disease or Ulcerative Colitis, but has shown good results in clinical trials. For this reason, my insurance company is denying coverage for this medication. My insurance company is suggesting instead I take two other commonly used medications that have been approved by the FDA. Well Hello insurance company! Check my file will you because I tried those medications and they did not work for me! My case of Crohn’s is such a severe case that I have tried all the pediatric accepted medications (including the suggested two medications) without showing signs of them working. However, this new medication has shown amazing results with me. I have spent seven of the eight years I have had Crohn’s without the benefits of remission. But now on this medication, I have been in remission for the whole year that I have been on it. While on it, I have gained 30 pounds, grown 4 inches, and had my ileostomy reversed. If that is not a success story for a medication then I do not know what is.


One of the only ways that my doctor has gotten insurance companies to pay for my treatments was by suggesting alternatives with greater costs. For example, when the insurance company rejected covering a special enteral kind of Pediasure my doctor proposed to them the alternative of a PICC line and TPN; only when faced with having to pay more money did they support coverage.  Why must it come down to that?


Patients have feelings and insurance companies hurt them time and time again. How can we get insurance companies to think about the health and feelings of the patient before making coverage decisions? I think I speak for all patients when I say it is time for things to change.

Bridging & Bonding

At the NIH Collaboratory Strategic Advisory Group meeting on value and sustainability of Learning Health Systems, I met Sachin Jain (@sacjai), a physician now working for Merck and representing pharma at the meeting.  He was delighted to tell me that he had published a paper in 2012, about Bridging and Bonding Capital, in which ImproveCareNow was mentioned, and he subsequently sent a link to the article.  I believe ImproveCareNow is promoting both Bridging and Bonding Capital.

Richard B. Colletti, MD is the Executive Network Director for ImproveCareNow and Director of the Inflammatory Bowel Disease Clinic at Vermont Children's Hospital

The Power of One

Plan Do Study Act Cycle Graphic

The ImproveCareNow Network uses ongoing, rapid improvement cycles to test changes and determine whether they result in an improvement. We use a tool called the PDSA cycle. Everyone uses them: care teams, the PAC, the Parent Working Group, our staff and leadership. We all use PDSAs to think carefully about and record what we want to improve (our SMART aim) and what changes to test as possible improvements.


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Before I Was Diagnosed

On behalf of the Patient Advisory Council, we would like to introduce you to Josh. Josh is going to be sharing some comics/animation as his schedule allows, and we are very excited that he has forwarded us his first comic (and a link to an amazing video he created). Enjoy!

Sami + Jennie


Hi! I'm Josh Weisbrod, an animator and comic artist. Currently I'm an MFA candidate in USC's animation program.

Last year I made an animated film about my diagnosis with Crohn's disease (available to view at But there were an arduous several years leading up to my colonoscopy in Medical Adventure Power!! Here is the story of the horrible Hamburger Helper meals and frequent trips to the bathroom that led me to the first of my (now 7) colonoscopies:

Josh Weisbrod is an animator and comic artist. This is his comic illustrating the time before he was diagnosed with Crohn's disease.




I recently traveled to Sweden and had the opportunity to talk to many people about the work that ICN and C3N are doing. Now here in the US, I am known for talking at length about this work, all the time, to whomever will listen. But sometimes it takes being far removed from it for a few days—and seeing the reaction of a completely new community—to not only gain a deeper understanding of what we are building together but also to articulate it in ways I hadn’t before. In other words, I got to look in from the outside.

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Data Quality Improvement

Monday mornings are supposed to be difficult. There’s no such thing as a “Case of the Thursdays.”  Dragging out of bed Monday morning is supposed to be hard. Some weeks it is. Just this March there was a week where it just wasn't. I’m not entirely certain I even hit the snooze button (gasp!). I had just spent my weekend, the American worker’s time for decompressing, in meetings. Lots of them. But these were not just your average meetings – they were the ImproveCareNow Learning Session meetings.


Following them, I arrived back in Cincinnati with renewed enthusiasm - a renewed enthusiasm that invariably comes from attending these sessions. See, I’m a data guy. We’re typically pretty black and white - no grey. We come to the table with preconceived notions of what’s going to work and what’s not. Clinical data managers are not usually innovators. They’re not expected to be. In many cases, they’re not allowed to be. I can tell you that they’re missing out. Fate or karma or luck or whatever steered me away from the world of highly regulated (read: robotic, monotonous, widget-producing) clinical trials work, toward ImproveCareNow where I find myself encouraged to not only be rigorous, but also innovative in my approach to nearly everything.


As ImproveCareNow’s data manager, I've seen things I never would have imagined. We've abandoned the old query-and-response method of data cleaning and replaced it with a Quality Improvement (QI) based method of data quality improvement. When I tell my old colleagues about this process, I get a range of responses from a polite you-know-better-than-that tap on the head with a smile and nod, to downright indignation. Many of my peers have expressed reservations and have been kind enough to tell me that my approach won’t work. This is how I know what we’re doing IS working.


Any time those that “know” tell me that I’m crazy, it’s time to push on. Why?  Because it works. In 3 years, we’ve been able to improve the quality of ImproveCareNow’s registry (database) in terms of completeness, accuracy and timeliness not by adding a mountain of burdensome queries and rework to the care centers’ already full plates, but by doing what we teach in this network. Becoming partners in data quality with the ImproveCareNow teams working hard at each center, by applying QI science to work and processes of our central data management team, and by applying the same QI methodologies that have enabled ImproveCareNow to raise remission rates to places we didn’t even think possible. We’re taking the quality of the data, and by extension the quality of the data-driven tools and improvement that are developed and implemented by care centers, to places we were told we couldn’t go.


I’m not naïve enough to think that anything we try is going to be a success. Quite the opposite. Part of the journey is stumbling, falling, getting back up and applying what we’ve learned. And that’s what makes it easy to drag myself out of bed on those Monday mornings and get right back to it.


Dan Jeffers, MS, CCDM is a certified clinical data manager working at Cincinnati Children’s Hospital. When he’s not coming up with innovative ways to make the data in ICN2 even better, he’s chasing his kids and chickens around his Cincinnati farm.

QI FUN-damentals

Second QI Fundamentals webinar, done (and the next one is tomorrow).

We have all asked ourselves "what do I want to improve?" and our answers became the foundations of our ALOs. The next step was to formulate SMART (specific, measurable, attainable, realistic and time-bound) aim statements. I shared my aim statements with you in my last post. But I'll post them just below too. There are actually two aims in there. Do you think they're SMART?

Applied Learning Opportunity AIM statements for Sarah Nocito My ALO as posted in the QI Fundamentals forum on the ICN Exchange. The Exchange is an internal knowledge-sharing platform, which ImproveCareNow uses to enable our participants to 'all teach and all learn', so we can improve care now.

The answer is yes. I've focused my project on a very specific target area (this blog) and I have measurable goals (add 4 new contributors, and increase weekly posting to 100%). I chose LOOP because I am the managing editor (so completing this project is well within my ability, or attainable and realistic), and it was easy to make it time-bound because the end date is September 4, 2014. That's the date of our Fall Learning Session, where my QI Fundamentals comrades and I will present the results of our ALOs.

Now it's time to set up run charts and see how I'm doing (and have something to show on September 4th). A run chart is a basic charting tool that displays variation over time. They are often used by professionals in quality improvement because they track the impact of changes on measures. A run chart can help someone like me (who is definitely no statistician) present my data in a way that tells the whole story. Run chart tracking LOOP contributors from March 26, 2014 through September 3, 2014 Maintaining a run chart is a good practice because it keeps me in touch with my data and ensures I am reviewing it in real-time so I can understand objectively if the changes I make (to my recruiting process) lead to an improvement (new LOOP contributors!). So instead of just observations or gut-feelings, I can rely on my data to support decisions about whether to adopt, adapt or abandon a certain change or intervention.

As you can see in my run chart (above) I have added one new contributor since beginning the test (NOTE: I had to adjust my baseline because my starting number of contributors was 16, instead of 17) . Sarah Myers is the Executive Quality Director for ImproveCareNow. Looking back at my aim, you'll probably recall that I said I was going to add a clinician, research/improvement coordinator, dietitian and nurse contributor to the roster. How am I using the run chart to also track contributor roles to see if I'm achieving the qualitative part of my aim? Data labels. To add a data label in Excel: click on the data point you want to label (making sure no other points in the series are highlighted), right-click, then select "Add a Data Label".

So, I have a question for you: What constitutes a contributor to LOOP? This is my thinking: a person who has accepted an invitation from LOOP to create or use an existing WordPress account and be assigned a user level of Contributor or higher; once the Contributor invitation is successfully accepted, the user must contribute at least one post.

One post. Is that enough? If not, how many?

If I want to add more contributors to LOOP, what changes should I test? I'm thinking of putting an ad in the ImproveCareNow Digest - an eNewsletter sent to all our participants - asking for volunteers. Do you think this will yield anything? Do you think I have to get more personal and approach people 1:1, especially if I want to meet my diversity goal?

If I asked you to contribute to LOOP, what would you need from me to help you make your decision? I'd be interested to hear your thoughts.


DIGMA: Group Medical Appointments

In the decade I have lived with Crohn’s Disease, I have steadfastly steered clear of support groups. It always seemed as though I were resigned to a couple of options in talking about my Crohn’s: 1) stick with my private medical appointment with only my parents and doctor, or 2) cautiously venture into the mysterious world of support groups. I exclusively favored the first option, and carefully built my community of friends with IBD a la patient advocacy and volunteering. And while that strategy worked for me, I only recently realized there’s another way.When Sami and I were invited to participate in the Children’s Hospital of The King’s Daughters (“CHKD”) team’s demonstration of the group medical appointment (better known in the medical community as Drop-In Group Medical Appointments, “DIGMA”) at the ImproveCareNow Spring Learning Session, we were happy to help. We were admittedly unaware of how a DIGMA session worked; and arguably incredibly naïve about the feasibility and sustainability of a model that – at first glance – seemed to be the very kind of ooey-gooey-woe-is-me support group we had intentionally evaded.


Children's Hospital of The King's Daughters at the Spring 2014 Learning Session during their DIGMA demoChampioned by the passionate team at CHKD in Norfolk, Virginia, the DIGMA model has enjoyed strong support from clinicians and families alike. Dr. Marc Tsou was introduced to the idea in the late 90’s when a parent gave him an article about the group model structure, about which he says, “It seemed to make so much sense. I thought of how many times in the day I’d say the same medical information to several families. Say that information six times, how inefficient, then think about how much that group appointment concept makes sense.” Dr. Tsou saw an opportunity to meaningfully build on the clinic’s collaborative culture; “Elements were there, the right type of people and group. The doctors were the ones who said we’ve got to do this, we’ve got to do this, the time was right, it was almost fate.” Fueled by his fearless nurse, Terri, Dr. Tsou and the CHKD team set about bringing the DIGMA model to their IBD families.


The first step was reaching out to a variety of clinicians – such as dieticians and social workers – to ensure that the group visits did not just include patients & families, but also a group of diversified care providers. After sending out an email to potential clinician participants, positive responses began to rush in. “For the most part all responded and had someone to come and participate,” Terri says. “Everybody was super receptive to it, they’ve showed up at every one since.”


Annette Kulzer, a mom of three boys including 16-year-old Kolin who lives with IBD, has been instrumental in running the group model appointments. “As a parent,” she says. “It opens doors to meet people we would have not met. If we were in another setting, we wouldn’t hear those stories.” An early adopter and believer in the DIGMA model, Annette has regularly provided a parent’s perspective into how the group appointments run. For example, after a group appointment with female and male patients, Annette suggested having separate groups for each gender and for different ages ranges to encourage comfort and participation. Annette and Kolin emphasize the sincerity of Dr. Tsou’s malleability in running the group sessions, and they always appreciate the weight their feedback holds.


In addition to the accessibility to a variety of clinicians and retaining certain elements of the traditional solo medical appointment (e.g., a one-on-one physical exam), the DIGMA model had a surprising but welcome impact; it provided novel insight for patients, parents, and clinicians alike through storytelling. Annette remembers a teenage patient who recounted having great difficulty taking the bus to sporting events with her teammates, since she was worried she might urgently need to use the bathroom. The story challenged Annette to reconsider Kolin’s hesitation to ride with his teammates to a game, as she came to understand that her son – who rarely complained – shared a similar fear that had gone unspoken.


Jill, CHKD’s social worker agrees that sharing stories can be incredibly eye-opening, and says, “It’s very, very different when you can look into the face of another mom or another dad or another kid, and say I understand this. Okay here’s somebody like me, they’re doing alright.” Dr. Tsou adds, “There was one mom who broke down into tears, she got very emotional, you think gee these sessions no one will share very much, but really they’re sharing their souls and baring their deepest fears. People might be skeptical but it really happens, but that’s super gratifying, a bit surprising, and confirmed to us that we’re on to something and something that deserves the attention and energy to keep it going.” When asked about group session attendees who were unsure at first, Annette says, “We’ve had many patients and parents who come in resistant, but within 15 minutes they’ve had the Kool-Aid.”


The group session can also be liberating for patients, who perhaps fear that IBD will be an “albatross around their neck for the rest of their lives.” Kolin enthusiastically agrees, adding, “Telling people what you’re going through helps a lot.” Positive and on target support grows organically from the patient-driven and clinician-facilitated model, and Kolin says, “You’re going to get so much out of it.”


While the organizational burden was heavy at the beginning, the team has happily tackled logistical issues to provide this innovative practice to their patients. Dr. Tsou explains, “The group appointment allows for so much more sharing of feelings, fears, and that’s really what so many families want and need and it allows it in the framework of still providing care. We’ve all had to learn a little different way of doing it.” Terri adds, “No harm in trying something, and I would guarantee that if others tried this model, they wouldn’t go back, it really does impact patients and families.”


But the potential of the DIGMA model doesn’t stop there: the team sees practical applications to rural communities (i.e., being able to run a group session in a rural community to maximize patients who can be seen), and across medical specialties. Dr. Tsou says, “I think it’s going to be more mainstreamed. It is the way medicine will be practiced in the future, we’re at the leading edge of it, which is cool.” Kolin adds, “I really want it to spread. I was really skeptical of it at first, but I really do enjoy the DIGMA model.”


A group medical appointment is, at its core, a treasure chest for patients, families, and clinicians; the ability to offer a holistic, patient-centered, and team-approach to pediatric care is innovative and vital to the collaborative and transparent culture championed by ImproveCareNow. The passion, integrity, and dedication the CHKD team has for optimizing chronic illness care is not only evident, but most importantly completely contagious. “We’re all passionate about our patients,” says Terri. “We were born to do this, it’s been really wonderful. Everyone had the spirit, it was right for us.”



A Healthy Meal Plan for IBD

In 2014, a question came to the ImproveCareNow Registered Dietitian (RD) group about how to choose foods that can promote healthy weight loss and control hunger without causing a flare of gastrointestinal (GI) symptoms. By answering questions from our community, the RD group aims to provide valuable tools and information for patients and families to better understand the role of nutrition in managing Inflammatory Bowel Disease (IBD). The RD group encourages partnerships between patients and their care teams, including dietitians, so together they can design a dietary plan to avoid food-related complications from IBD and promote healthy weight maintenance.

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Vitamin D and Inflammatory Bowel Disease

[Editor’s Note: This article was originally published in CIRCLE January 2012]

Kids with Crohn's disease and ulcerative colitis often have low levels of vitamin D. How does that happen? When you are not feeling well, you don't eat as well. If you don't eat foods supplemented with vitamin D, it could lead to a vitamin D deficiency. You put sun screen on to prevent skin cancer (a good thing to do), but sun screen also blocks the ultraviolet rays that stimulate your body to make vitamin D. Some patients with Crohn's disease have inflammation in the part of the intestine that absorbs vitamin D into the body, so some of the vitamin D eaten goes right through without being absorbed.

Vitamin D is important for bone growth, bone density and bone strength, and for growth itself. So getting enough vitamin D is especially important for growing kids.   Vitamin D also appears to have other health benefits.

How much is enough vitamin D? Recently recommendations have changed-more vitamin D is recommended now than before: 600 units a day (instead of 400) for kids 1 to 18 years old. For patients with Crohn's disease or ulcerative colitis, sometimes more may be necessary, such as 800 or 1,000 or more units per day. (Caution: excessive intake of vitamin D can be harmful.) Ask your clinician or dietician what the right amount is for you.

How do you get enough vitamin D? A daily multivitamin supplement usually has 400 units per tablet so that's a good place to start. Vitamin D tablets are also available. Milk and yogurt are fortified with vitamin D, usually about 100 units per serving. Some orange juice is fortified with vitamin D.

To absorb vitamin D into your body, it has to be bound to some fat. So when you take your vitamin D supplement (including skim milk or non-fat yogurt) be sure to eat food with fat at the same time, for example, at least 2 or 3 teaspoons of peanut butter, or margarine or oil.

No bones about it! Get your daily vitamin D. For more information click here.

Richard Colletti, MD
Network Director, ImproveCareNow

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