C3N Webcast

Posted on 25 March 2013 by ImproveCareNow

Learn more about C3N’s N-of-1 Study and the MyIBD Platform

We invite everyone who is interested in innovative new approaches to chronic illness care to join this free, live and interactive webcast hosted by the Collaborative Chronic Care Network (C3N) on April 5^th at 1pm ET.

Ian Eslick

Ian Eslick, of the MIT Media Lab, and Dr. Peter Margolis, Scientific Director of the ImproveCareNow Network and co-principal investigator of the C3N Project, will chat informally about the C3N’s innovation, the N-of-1 Study, & technology platform. This is a great opportunity to listen and learn more about how C3N is helping clinicians and patients work together on their care.

REACH Replication Study to be Presented at DDW2013

Posted on 20 February 2013 by ImproveCareNow

Dr. Richard Colletti – Network Director for ImproveCareNow – announced today that an ImproveCareNow study has been accepted for oral presentation at Digestive Diseases Week in May. This is a highly innovative study done in collaboration with the Department of Biostatistics and Epidemiology of the University of Pennsylvania. It is a replication of the REACH study, and the first pediatric comparative effectiveness study of anti-TNF drugs.

Congratulations to Mike Kappelman, Wallace Crandall and the research team. And congratulations and thank you to all of the centers whose data made this study possible. More comparative effectiveness studies are planned.

Here is the abstract:

Kappelman MD, Bailey LC, Crandall WV, Zhang P, King E, Joffe M, Colletti RB, Forrest CB and the ImproveCareNow Network

Real-World Clinical and Comparative Effectiveness of Infliximab in Pediatric Crohn’s Disease

Background and Aims: Clinical trials in pediatric Crohn’s disease (CD) are difficult to recruit for, enroll highly selected subjects, and utilize standardized protocols. Thus, efficacy data from trials may not be generalizable to clinical practice. Studies of real-world clinical effectiveness are needed to fully evaluate evolving therapeutic options. We sought to use data from a multicenter clinical registry (the ImproveCareNow Network, ICN) to evaluate the clinical and comparative effectiveness of anti-TNFα biological therapy in children with moderate to severe CD.

Methods: ICN maintains a registry of medication use and clinical and laboratory data collected during pediatric gastroenterology outpatient IBD encounters (33 centers in this analysis). We identified a cohort of new users of infliximab and adalimumab with characteristics (selection criteria) similar to subjects enrolled in the REACH clinical trial. To evaluate clinical effectiveness, Pediatric Crohn’s Disease Activity Index (PCDAI) scores and corticosteroid use were evaluated at the visit closest to 10 weeks following induction. Missing data were estimated by multiple imputation. Response (PCDAI <30 and decrease by ≥ 15 points), remission (PCDAI < 10), and steroid-free status were determined. To evaluate comparative effectiveness, we performed a trial simulation comparing 6 month outcomes of remission and steroid-free remission, adjusting for disease severity and medication use for the 6 months before the start of the trial, among biologic initiators and non-biologic users, using Cox proportional hazards models and generalized estimating equations.

Results: 192 biologic initiators (53% male, mean age 14.9 years, mean PCDAI 39.7) were included in the analysis. Overall, 80% experienced response, 39% remission, and 33% steroid free status at week 10. Among those on concomitant immunomodulators, 82% experienced response and 48% experienced remission (REACH clinical trial 88% and 59% respectively). In the trial simulation, 198 biologic trials were compared with 1157 non-biologic trials. Biologics were associated with increased remission (hazard ratio 1.5, 95% CI 1.1-2.0) and steroid free remission (hazard ratio 2.0, 95% CI 1.5-2.7), with corresponding number needed to treat (NNT) of 7.8 and 5.3.

Discussion: The real-world clinical effectiveness of anti-TNFα biological therapy observed in a multi-center pediatric IBD network is similar to the efficacy estimates from the REACH clinical trial. Concomitant immunomodulator use is associated with increased effectiveness. Compared with conventional care, biological therapy is more effective at achieving remission, particularly steroid-free remission. The NNT can be used to guide clinical decision making regarding risks and benefits. These findings support the use of the ICN registry for comparative effectiveness research.

The Search for New IBD Therapies & Cures

Posted on 8 January 2013 by sarahnocito

Last month Peter Margolis, MD, PhD – Scientific Director for the ImproveCareNow Network – was interviewed by Steve Usdin of BioCentury on the topic of Network Building. What jumped out at me was Peter’s response to the question: Can the Network that you’ve created also be used to help in the search for new therapies and cures?

Take a look at the video clip: BioCentury 12.30.12 | Network Building

I’ve worked with ImproveCareNow for over two years now and I am constantly impressed with the growing variety of positive outcomes that stem from the work being done across the Network. Although hugely important, it’s not simply about raising and sustaining remission rates for kids with Crohn’s and colitis.

YouMeIBD: Making the Connection

Posted on 7 December 2012 by samisophia

Today is the last day of Crohn’s and Colitis Awareness Week – a week of awareness and pride. Four and a half years ago, my world was rocked by my diagnosis of ulcerative colitis. April 22, 2008. Today, though, I’d like to suggest that my story really starts nearly three years later on April 11, 2011.

Three simple little words sparked many of my closest relationships: You. Me. IBD. Jennie and I are a perfect example. Although we have since found we have much more than our diagnosis in common, our friendship began because I also have IBD and (with an embarrassing amount of enthusiasm) wanted to write for her blog. YouMeIBD is also the name of a soon-to-launch C3N innovation. Young tech-savvy IBD patients are apt to go to the Internet looking for support, but they (a) may not know a safe community in which to find it or (b) may feel too timid or cautious to ‘friend’ others within a support community such as a Facebook group. We all may have the same diagnosis, but we all know our diagnosis is not our identity. YouMeIBD works on the presumption that mutual interests are far better indicators of friendship potential, and thus suggests friends for a patient based on mutual likes and dislikes.

How? A game-like quiz prompts users to answer questions about their likes and dislikes. Their answers, along with other information shared with the app, matches them to other patients within their age range with similar interests. Users can also create their own questions. The theory behind all of this is that use of YouMeIBD will be associated with increased patient social network density and engagement, an increased sense of well-being among patients, and ultimately better health outcomes. Why are connections between patients important?

In April 2008, I came home from the hospital with a link for an online support community. I shrugged it off with excuses for why I was okay on my own – and I was. For nearly three years, I got along just okay on my own – but just okay isn’t wonderful. I felt a hole, but I knew it wasn’t because I needed help. It took me three years to realize the opportunity to be a friend is just as valuable as the opportunity to have a friend. On April 11, 2011, I came home from school, where few knew my diagnosis and even less knew my story, and for reasons I can’t remember, decided I was ready to click the link. I found a community that day. My world was rocked for the second time. The day I sparked my first connection around three words: You. Me. IBD.

YouMeIBD will facilitate those connections for so many more patients. By sharing our stories and connecting with other patients, we will be not only benefiting ourselves but the community as a whole. The research behind YouMeIBD suggests that while much communication regarding chronic illness among patients tends to be negative (though absolutely understandable), positive communication fosters motivation, happiness, and confidence. The psychosomatic effect of a patient’s support community, or lack thereof, is profound. YouMeIBD’s mission is to enable positive and constructive relationships, the key to which is connecting patients with ties between them that go deeper than their diagnosis. Jennie and I have contributed to the development of YouMeIBD for several months, and I speak for both of us when I say we are thrilled to be nearing the launch date for an application with so much potential.

A wonderful mentor of mine, whom I met through that very first online support community, once advised me: “If it’s scary, then you should run at it even harder.” It’s a quote I keep on my computer desktop because I believe in it so wholeheartedly. IBD is scary, but I think it’s even scarier if you allow that fear to paralyze you from taking steps forward toward recovery – of the body and the spirit. It took me three years to grow the courage to share my story and find support, but I would not be here celebrating Crohn’s and Colitis Awareness Week or writing this blog post if I had not run towards that fear. Be brave. Reach out. Get involved. We’ve shared with you many opportunities this week, and there are so many more if you open yourself up to the possibilities. On April 11, 2011, I found the confidence to reach out, and that same confidence carried me to writing for this blog. It will be scary, but do it anyway.

Population Management Drives Improvement at University of Michigan

Posted on 18 October 2012 by ImproveCareNow

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.