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The Moment, Continued

I've spent two weeks now at Cincinnati Children's Hospital, partnering with ImproveCareNow colleagues here in developing opportunities for patient engagement. Yesterday, fellow PAC member Alex invited me to be present at an orientation for newly diagnosed IBD patients and their families. As I sat at the "staff" table, I was hit by a quiet wave of shock. It's been over six years since my diagnosis. Over six years.One moment, I looked at a girl of about fourteen in the audience and saw my younger self in her. At the same time, I know I've changed in meaningful and (then) unimaginable ways since my diagnosis.

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The Moment

Jennie at the Finish Line

I can, very clearly, recall the moment I realized I was a patient. There had been hints, of course: my Crohn’s diagnosis, lining up pill bottles on the counter, and my parents memorizing the GI nurse’s number. But I had obstinately protested, believing – if nothing else – that I wasn’t sick, I couldn’t possibly have a chronic illness, this was all just temporary. But after a few weeks, when the fall started to freeze into winter, the stark realization that the illness wasn’t going anywhere began to settle in. And then, during an appointment, my GI gently nudged a piece of paper towards me with the name and email address of “another girl like me,” meaning another pediatric patient. Finally it hit me square between the eyes – I had a chronic illness, I was going to be a patient forever, there were others “like me.”

 

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Hello Andrew

Andrew Kornfeld surfing at ocean beach in San FranciscoIt was the spring of 2007, and I was finishing up my junior year of high school. It had been the hardest year of my life with classes becoming increasingly more difficult and a mysterious illness plaguing my body.  With daily diarrhea, debilitating stomach cramping, anemia, and other severe problems (which I will spare you from) it became clear that something was seriously wrong –– it was more than just the gluten sensitivity and irritable bowel syndrome I was previously diagnosed with.  My illness was at a tipping point and my quality of life had decreased dramatically.

 

I was finally given a colonoscopy and subsequently my mystery was solved: I had moderate to severe Crohn’s colitis.  While I remember feeling relieved to finally have a diagnosis, I was also extremely disappointed that it had taken nearly a year. How much needless suffering had I endured?  Soon after my diagnosis and one failed surgery later, I made the transition to the UCSF pediatric IBD clinic with Dr. Mel Heyman. This may have been the most important decision of my life. Dr. Heyman, along with Laura, the nurse practitioner and a team of other medical professionals, identified the right medications for me, referred me to an exemplary surgeon at UCSF and ordered additional tests. Over the following months, the substantial decrease in my symptoms was nothing short of miraculous. To me it felt like being released from a confining and painful space, into one that was warm and safe.

 

Over the years, I have felt truly empowered by the team at UCSF to take an active role in the treatment of my illness. Some of the modifications I’ve introduced into my care plan have involved: a gluten and dairy free diet, the intake of potent probiotics, and getting plenty of exercise. I am an avid surfer, and feel really energized by the rough waves at Ocean Beach here in San Francisco. I have also recently become interested in how psychological stress may negatively impact patients with IBD, and would like to investigate this further. I am grateful beyond words to have had Dr. Heyman as my pediatrician and to be currently volunteering my time as part of the UCSF IBD team.

 

Andrew Kornfeld Andrew graduated from the University of California, Santa Cruz with majors in Neuroscience and Psychology. He is currently volunteering with the UCSF IBD clinic, and plans to attend medical school starting in the fall of 2015.


Some Time With My (Gutless) Friend

I had the pleasure of picking up a friend at the airport a few months ago. She had flown in, carefree and light on luggage (literally one 5 X 7 envelope contained everything she brought, including her bedding), to spend some time with me, my curious wife, and my even-more-curious daughters. She had also come to root around in my office and make new friends at the hospital where I work – OU Children’s. I loved showing her my cool office, the gizmos we have to help our patients learn and have a good time, and the terrific staff and providers that see our patients on a regular basis.

I was amazed to see, when I picked her up, that she was wide-eyed and ready to go. She had her arms up, food and drink in hand, and was ready for anything! Her spirit was catching; my daughters were immediately enthralled and showed her around our house, where she stayed at night, after going with me to the hospital each day.

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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 https://vimeo.com/81004804). 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.


Livsuppgift.

 

livsuppgift-1.jpg

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.


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