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Transcript of PR-COIN
What is PR-COIN?
PR-COIN is a research and quality improvement network of pediatric rheumatologists, nurses, therapists, social workers and support staff at pediatric rheumatology centers who work together in partnership with families to transform how care is delivered to children with JIA.
PR-COIN is a research and quality improvement network. We take the results of research, and help to implement them quickly and efficiently through quality improvement practices.
Finding Better Ways
While drugs and treatments for JIA have gotten better over the years, doctors still need to know more about which methods work best. By sharing information and best practices, PR-COIN clinics can find better ways to reduce pain, improve how well joints work, increase children's ability to play, get better treatment results, and so much more.
Parent Working Group
What makes PR-COIN unique is our dedication to Quality Improvement (QI).
Sample QI changes we can measure are:
Doing lab tests to check for side effects of medicine
Teaching about medicines
Doing regular eye exams for uveitis on time
Pediatric Rheumatology Care and Outcomes Improvement Network
Develop new ways to manage care for children with JIA
Make sure most recent research developments are put into action quickly so all children receive the best care.
Measure how well children are doing so we can improve how we care for them.
Create a large database of children with JIA so researchers can use great data to work toward a cure
Learn more about the current health of JIA patients
Assist in future improvement projects
Together we are working to change the way kids with arthritis live their lives and imagine a new world!
What is Research
and How Can YOU Help?
Many patients do not understand what it means to participate in research. Answering a survey on how you feel or what is important to you is an example of participating in research. Other examples include suggesting research topics, helping to design studies, raising awareness of studies and their results, or signing a consent form to allow researchers to use your child's medical information to study treatment options. There are many ways to participate in research and the most important aspect is that your voice is heard!
Our Parent Working Group is very active and its members are important partners in the research and quality improvement aspects of PR-COIN.
to learn how you too can make a difference!
Why does QI matter
Children with diseases like arthritis often get different care depending on who they see or where they are. It may not be what works the best.
With QI, the goal is for each child to get the best care available, and this can lead to better results. Our hospitals share proven best practices that are used at all PR-COIN sites (PR-COIN network) so they improve care faster than other places.
Sample QI results we can measure are:
Higher remission rates
Lower pain scores
Better physical function
JIA Quality Improvement
If all these steps are done well all the time, good changes happen.
How do we do QI?
We collect details that show how we are doing ("measures").
We set a goal to improve.
We test small changes to try to reach our goal.
We keep changes that work, plus try new changes.
We measure the impact of our changes.
We are building a teen and adolescent working group to allow older children and young adults a voice! Contact us if you or your child might be interested in participating in a work group.
In a survey asking parents "What is the first word that comes to mind when someone says 'research'?", over 25% replied with the word "Hope". While research still brings negative thoughts for some, the overwhelming majority appreciate research and feel hopeful about the future of care for our children.
- Self-Management Support
- Previsit Planning
- Population Management
- Shared Decision Making