As we forge ahead in our mission to improve outcomes for children and adolescents with JIA, we recognize the importance of employing a multifaceted approach to acheiving outcome improvement. PR-COIN
is a collaborative of expert physicians, nurses, physical and occupational therapists, social workers, dieticians, data management professionals and technicians coming together to share information, experiences and tools to this end.
While our teams bring clinical and statistical expertise, we know that families own the child expertise. PR-COIN teams are excited to work with engaged patients and parents as partners in our improvement work, because we understand that, as parents, you know your child better than anyone else. As a parent, you have navigated the path with your child for managing their disease while witnessing its impact. All of your experiences generate a wealth of insight, and we want to learn from you.
Shared Decision Making
We began our parent engagement strategy with the Shared Decision Making project. In managing a chronic disease like JIA, patients and their families face a multitude of questions. "What medication options exist?" or "What are the side effects?" among others. We wanted to find a way to help physicians and families tailor the conversation to plot the best course of action.
A team of PR-COIN project staff and parent volunteers have developed materials for parents and clinical teams to use to support and guide decision-making regarding different aspects of care.
Parent Work Group
The next phase of our engagement strategy is launching the PR-COIN Parent Work Group. The purpose of this group is to formally integrate parent volunteer involvement into the PR-COIN governance structure. Through parent meetings headed by our parent engagement advisor, working with the steering committee and participation in our biannual Learning Sessions, we aim to bring parents on as active partners.
Contact firstname.lastname@example.org for more information.
How Can Your Child Be Part of PR-COIN?
All pediatric rheumatology practices are eligible to join the PR-COIN network and member facilities are listed on our teams page. Ask your rheumatologist how your child can be part of PR-COIN. If your facility is not listed, feel free to provide your physician with our contact information. We would love to discuss how they can join us!
We appreciate your support of our efforts to improve outcomes for children and adolescents with JIA.