ImproveCareNow Remission rates are posted for September 2012 for centers with greater than 75% enrollment of eligible patients. We have also shared them on our website, in CIRCLE, and on our Facebook page.
The ImproveCareNow Quality Improvement (QI) Team at the University of Michigan has been working very hard at improving their QI processes. They now have had a long trend of improving remission rates from one population management report (PMR) to the next. But like any good researcher, they had to ask themselves: is this a real improvement in disease status for our patients, or an artifact of better data?
Physician Leader Dr. Jeremy Adler thought that major contributors to improved remission rates over the past year include: 1) improved processes with more complete data collection, 2) educating clinicians who misunderstood the methodology and consistently misclassified visits, and 3) new and improved PMR process, in that order.
Dr. Adler’s team began digging through their data, and leaned a few things. In the interest of helping others in the ImproveCareNow Network – which is what collaborative medicine is all about - the Michigan team shared what they learned from analyzing their data.
Here is what the Michigan Team learned – in Dr. Adler’s words:
1. We are still collecting data on paper forms (we just went live with EPIC). We had a high rate of visits with missed data capture. So many of the data points were old. We made many attempts to improve return rates of data forms, which eventually improved our data collection rates. We also have had several changes in our forms designed to help highlight questions that were frequently missed.
So I went through our pre-visit planning (PVP) forms to manually calculate remission rates from the column “PGA Remission Status” (# patients in remission / # total patients). I then went through Excel to exclude the data points where the data were >200 days old.
On the enclosed graph, the red line represents the original remission rate from the PMR. The blue line represents remission rates with data >200 days old excluded. I was surprised to see that there is very little difference. I suspect that this means that when we miss data collection, we miss it for everyone, not just sick patients.
2. I then learned that a provider had a misunderstanding of the Physician Global Assessment (PGA), and was routinely classifying based on overall disease course, rather than disease activity at the time of the visit. I then went into excel to exclude all the data from that provider (green line). Again the remission rates did not change substantially.
3. This leads me to believe that our improvement in remission rates may be true improvements in disease status. The improvement in remission rates starting in April-May coincides with when we began routinely having population management meetings, and routinely acting on our findings.
ImproveCareNow is an active, open learning health network that uses collaboration and data to drive improvements in health outcomes for kids with Crohn’s disease and ulcerative colitis. Since ImproveCareNow began, the percentage of kids with Crohn’s disease and ulcerative colitis who are in remission (feeling well, no symptoms, fully active) has increased from 50% to over 75% – all without new medicines.
Our remission rates are published monthly in our Patient and Family eNewsletter CIRCLE, and to our Facebook page and our website. Sign up to receive CIRCLE today. The next issue is scheduled for publication on Tuesday, September 25th!
Years ago, a doctor asked me to draw a pie-chart and shade in how much Crohn’s affected my life. I remember hesitating and then looked up and said it was impossible. There was no way to decide where my life and my Crohn’s didn’t walk hand-in-hand, they were as intertwined as written words on paper. Alone it might just be blank pages and a pen, but together they make a story.
I had just turned 12 when I was diagnosed with Crohn’s disease. This is what I remember most about that time: being scared, confused, alone, angry, lost, lonely, and feeling robbed. I didn’t know what Crohn’s was before my diagnosis and thought that it meant taking a pill and not eating broccoli. I did not want to be sick, in fact I refused it, and wished that I could rewind the past few months and never be diagnosed.
But a lot can happen in 9 years, and indeed a lot has happened. I tried every medication to little avail, spent copious amounts of time in the hospital away from school and friends, dealt with people’s ignorance about bowel disease, and acquired a medical vocabulary. I’ve lost count of the PICC scars on my arms and the medications I took. I have boxes of medical ID bracelets and needle caps and finger puppets (the reward for a blood-draw at my pediatric hospital). And even though it’s an enviable collection, what I am most proud of is being involved in awareness and advocacy through Crohn’s and Colitis Foundation of Canada (CCFC) and our Youth Advisory Council (YAC) here.
When I was applying to college, people who didn’t know me well would timidly warn me, “Oh you should stay at home for school. You’re sick”. I absolutely hate being told what I cannot do, because no one else can tell me what I’m incapable of. I left Nova Scotia for Boston University, where I’ll be a senior in the fall. I’m studying Psychology and plan to apply for a clinical PhD in pediatric health psychology in the winter. It’s a mouthful, but I want to be a pediatric psychologist for chronically ill children.
After my freshman year at BU, I became extremely sick during the summer. I had spent so long feeling unwell that it seemed ordinary to me. My GI scoped me and saw the inflammation in my colon was severe and the bowel had begun to die. I was so relieved to hear the news because it meant that something drastic would finally be done. I chose to have a proctocolectomy (aka everything after the small intestine is gone) and a permanent ileostomy. I love my bag so very much, it was the right choice for me and my disease, and wouldn’t trade it for the world’s best working colon.
I think that one of the hardest parts about living with IBD is understanding that it’s chronic. I don’t think we ever have a solid understanding of the word since there is virtually nothing in our lives that is stays the same forever. We grow, we move away, we meet new friends, we watch new television shows. Even though it’s been almost a decade of being an IBDer, there are still mornings when I remember my ostomy and can’t believe what’s happened to my body.
I was recently in Peru to hike Machu Picchu to raise awareness about IBD and ostomies. People asked me if it were possible go back and take away my Crohn’s if I would. I said no, because I wouldn’t trade the clarity that living with IBD has given me on my life and what I want to do for anything. I am not my IBD, I’m just a girl who likes to run, loves Patrick Dempsey, and could probably win a banana-eating contest. And everyday I do my best to live by the words I wrote to myself after being diagnosed, “You hope to rise above your disease and excel”.