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.
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Thanks for talking about our work, Peter. Our research group at the Children’s Hospital of Philadelphia has been working with ICN for a couple of years now. We were interested in all the data that were being collected to improve the care of patients. The team wondered if those same data could be used for research. We approached this question with some skepticism. However, we were pleased to learn that, indeed, data obtain from patients in ICN can be used not only to improve care, but also for science.
For example, the famous IBD study–called REACH–enrolled 112 patients in a trial to evaluate whether Remicade works in children with IBD. The study showed that in fact Remicade was highly effective in markedly reducing IBD symptoms in many children. We used the ICN data to replicate the REACH study. Our findings (with nearly double the number of patients as REACH) produced the same estimates for treatment effectiveness as the REACH study. A big difference between REACH and the ICN replication is that our study was done in a matter of weeks, and cost much less (thousands rather than millions).
Now we are comparing biologic therapy (Remicade and Humira) with standard treatment (steroids, thiopurines). This type of comparison study has never been done before. The results are intriguing. We find that biologics are very effective at helping children and teens achieve a state of disease remission, which is when there are no symptoms and the patient feels “great.” We also find that standard of care (thiopurines and steroids) are also very good. Biologics appear to be better at achieving remission AND getting kids off steroids, while standard care is more likely to require use of steroids (which have some undesirable side effects) to achieve remission.
The key take-home message for our work is that the learning that happens in ICN can occur on multiple levels — how to improve the care for all patients with IBD, comparison of alternative treatments and understanding the effects of different combinations of therapy, and how treatments affect a single patient. This multifaceted learning is what makes ICN so exciting for us.
Chris
Christopher Forrest, MD, PhD
Children’s Hospital of Philadelphia
The work that Chris describes is a major breakthrough in pediatric research. This is the first time that the effectiveness of infliximab in children has been compared to an untreated group. This research is a model for using real world data in a robust database for comparative effectiveness in children, taking less time and at lower cost. Congratulations to Chris, his colleagues at Penn, as well as Drs. Mike Kappelman and Wallace Crandall, for demonstrating this research paradigm using the ImproveCareNow database.
Dr. Margolis’ interview with BioCentury were also written up on the Cincinnati Children’s blog: http://cincinnatichildrensblog.org/in-the-news/patient-advocacy-building-networks/#.UOxT3qyZZ8E
Thanks Sarah for posting this interview. I was trying to convey that the work that we’ve been doing in ImproveCareNow to standardize and eliminate unwanted gaps in care delivery is a great foundation for research and for really accelerating progress towards better outcomes for patients with IBD. That’s because when we standardize, we can much more easily identify where there are gaps and begin to study how to close them.
It has taken almost 5 years, but the network is reaching a stage of maturity at which we can improve care and study how to improve all at the same time. We are expecting some very significant advances in the coming years. For example, with our collaborators Chris Forrest, Charlie Bailey and Marshall Joffee at Philadelphia Children’s and Penn, we’re able to compare different treatment options to see what’s best in the real world of care. This is going to give patients, families and doctors much better information about what they can expect from medications.
We are also not far from being able to experiment as a network so that together, all ImproveCareNow care centers can test different strategies to provide great care to our patients so we can understand what’s best, particularly for care centers with different types of patient populations and resources. The new ImproveCareNow registry will also allow the network to begin to study how medications work when they are used broadly and to begin to allow patients to find out if they are eligible to participate in trials of new drugs and devices as they become available. And when we get a result, by being part of a network, it will be much easier to be sure that parents and children are aware of new findings that are relevant to their care.
Peter