Registry? What Registry and Why?
Our campaign to help the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) fund a new and improved registry has some people asking questions. I realize many people might have these same questions. I thought I’d take a few minutes and try to explain the PR-COIN registry.
I’ve received a few messages from people asking, “What is a registry?” A registry is a computer database used to store information about the health and care of a patient. You may be thinking, “Wait, my child’s hospital
already stores all of that information. Why does PR-COIN need their own registry when all that information is already available in my child’s electronic health record (EHR)?” The simple answer is that PR-COIN doesn’t just want to improve care and outcomes for a handful of JIA children at one hospital. They want to identify and share best practices across participating hospitals and improve care and outcomes for ALL children with arthritis and other rheumatic diseases no matter where they go for care. “Say what?! That’s a huge goal!” Yes, it is, but it’s achievable with the right tools, like a registry that both
supports improvement in quality of care and helps drive discovery through studying data collected at regular clinic visits. Using such a shared registry to improve patient outcomes is one of the reason PR-COIN is called a “learning health network.” The best way to explain how is to demonstrate the use of a PR-COIN registry with a project like Treat to Target.
Treat to Target (T2T) is when the providers and patients/family set a target as a team. For some, this target could be inactive disease. For others, it could be low disease activity. They create a treatment plan together using
shared decision making. Each appointment, they evaluate whether the patient is approaching the target and adjust the treatment plan as needed. One of the PR-COIN centers decided to study the use of T2T in children with arthritis. The rheumatology team worked together to standardize how they evaluate and treat patients with polyarticular juvenile idiopathic arthritis. Then they studied how their patients did when they were treated using T2T. They had more success with T2T in reducing disease activity and the need for joint injections when compared to usual care before T2T. Other PR-COIN centers were eager to see if they could produce the same results. After testing T2T at a couple of other PR-COIN centers, they decided to make it a network-wide project.
PR-COIN uses outcome, process, and balancing measures to evaluate the T2T approach. The outcome measures look at how a patient is doing based on a clinical disease activity score that includes joint counts, patient
measurement of their overall well-being, and doctor (or nurse practitioners) assessment of disease activity. The process measures look at whether providers or the care team completed a process as part of patient care. Some of the process measures used are whether a treatment target was set with a patient, if a tool to support self-management was given, and if a best-evidence treatment algorithm/clinical decision support was used. The balancing measure is to make sure that a change that reduces disease activity doesn’t have some other negative effect. In this case, they wanted to track whether a possible increase in medications used (such as DMARDs or biologics) to reduce disease activity did not result in an increase in dangerous infections.
They implemented the project in stages to be able to study how setting a treatment target, using self-management support tools, and using care algorithms impact the disease activity in children with arthritis treated at
many hospitals. Instead of just using the outcomes of a subset of the approximately 500 JIA patients at the initial center that started the project, they had a registry of over 7,500 JIA patients they could use. They could compare center performance to identify which centers were doing well. Those centers then reported on their activities and approaches to challenges to the other PR-COIN centers so that everyone could learn from the most successful. With the help of the registry and the collaboration between centers, they were able to see improvement on the measures they were tracking.
“Wow! If they were able to do all that with their current registry, why do they need a new one?” The new registry will have additional tools and can have additional measures. It will include quality improvement
tools and tools to allow for easier collaboration between centers, with families, and even with other learning health networks. They’ll be able to work on additional projects and make more progress in improving outcomes for children with arthritis…and not only for 100 children at one center or for the more than 7,500 in their registry, but for all of the children with juvenile arthritis.
But they’re not going to stop there! They’ll also be able to add children with Lupus, and eventually other rheumatic diseases, to their registry and have custom measures for the different diseases. They have big plans. And those plans require a new registry. And registries cost money. That’s why Abby’s Army created our PR-COIN Registry Fund.
You can learn more about PR-COIN at www.pr-coin.org.
Abby’s Army has a goal of raising $30,000 for the new registry. We have donors who will match $20,000 of those donations making that $30,000 become $50,000. And then we have a grant we can apply for at the end of January to make that $50,000 become $100,000! If you want to help, you can click the donate button at the top of the page or donate to the Facebook fundraiser at www.facebook.com/donate/979372449593109. As of this blog, we have raised $7,740 of the $30,000 goal. Please help us get closer. Donations are tax deductible and 100% of the money Abby’s Army receives through January 31st will go toward the PR-COIN registry.