PR-COIN is a network of teams at rheumatology centers who in partnership with families are working together to transform how we deliver care to kids with JIA
Parent lead Kerry Ferraro is sharing about the Patient Education Grant we received from @pfizer. Lots of materials being developed. Would providers use a video? #prcoinlearningsession
Dr. Ari Pollack from @seattlechildren is sharing about using pictures to graph and share patient stories to counter numeracy challenges. Patients have many ways of showing data through visual analogy #prcoinlearningsession
Julia Harris is sharing about the Measures Committee at the #prcoinlearningsession. Active data drives interventions. 21 measures are included in the registry.
We are excited to kick off our spring Learning Session with the State of the Network with @dr_esi! She shared updates like QI training and excitement over what we can achieve with data. There are over 7,000 active patients in the registry
The inaugural Nancy Griffin Award was presented to Angela Young at the Fall Learning Session. Nancy was a longtime QI specialist for PR-COIN at Cincinnati Children’s Hospital. Angela was nominated for her important contributions to patients and families. https://t.co/3d90scp8sg
We are excited to announce that our #JuvenileArthritis Accommodations Toolkit and College & JIA Toolkit are now available in Spanish. ADAPTACIONES PARA LA ARTRITIS IDIOPATICA JUVENIL et UNIVERSIDAD & AIJ. Check them out and share! https://t.co/PYCJVq8Ek1
A little #mondaymotivation. Our patients are our reason and they say it best.
In Kyleigh's words: "The self-management assessment really helps me to stop and think and is training me to better communicate my needs to my physician"
Read her story at: https://t.co/ADPZdUBB8w
Thank you John Bostick, CEO of @HiveNetworksInc, for delivering a Keynote that inspires us to use the technology curve to grow and move faster. #PRCOINLearningSession
We are kicking off Day 2 of the #prcoinlearningsession with reports on the great work of our committees. Dr. Sandy Burnham of Outcomes, Dr. Sheetal Vora of Scientific Development and Outcomes, Dr. Tzielan Lee of the Informatics and Kerry Ferraro heading up Patient Engagement
David Hopper of the Improving Renal Outcomes Collaborative (IROC) Learning Network delivers the Keynote address at the #prcoinlearningsession. He shares their journey of becoming a nonprofit and the pathway to mastery of QI they have developed
Parent Heidi Barrett of @seattlechildren tells the story of how they became the "Remicade Family" with multiple diagnoses, and why we need PR-COIN #prcoinlearningsession
We are excited about the Fall 2023 Hybrid #PRCOINLearningSession taking place next week in Seattle, WA, and on Webex! Attendees will hear Inspiring parent stories, learn about telemedicine optimization tools, and hear research project updates. https://t.co/wgchrodFse
"How long does it take for the medicines to work?"
"What vaccines shouldn’t my child receive?"
You have many questions when your child is diagnosed with #juvenilearthritis. Our FAQ provides guidance on many of them. https://t.co/PYCJVq86ut
School is starting and we have toolkits for college students, as well as a general accommodation guide. We've also just added a new FAQ to make it easier for families learning to manage JIA to get answers.
It's all on our Tools & Resources page. https://t.co/PYCJVq86ut
CARRA & @arthritisfoundation announce the funding of 10 grants totaling almost $1.2 million! Research will address specific research gaps in JIA and other pediatric rheumatic diseases. Congrats to our awardees! https://t.co/tOPtLxjqIp #carrainc#pedsrheum#research