Dear Community,
Another month of summer and the roller coaster of COVID has been twisting and turning. With rising case rates, we are again facing questions from families about schools, masks, and vaccines, in an environment with ever-shifting data. ACTION has endorsed an update to the guidance document lead by our infectious disease colleagues (Return to School Recommendations for SOT Recipients). We can anticipate this issue will remain active in the coming year. Also, see below for updated COVID-19 resources for Patients & Caregivers. Our upcoming Fall meeting will be virtual, and we are working hard to make the most of this medium with an engaging and interactive agenda. We hope to see many of you there. It will be a great time to catch up with each other, recall all of the work ACTION has done over the past year, and energize ourselves to do even better in the year to come!
Regards,
Co-presented with the
The right organ, for the right patient, at the right time
Thursday, September 9, 2021
4:00 PM Eastern
CO-MODERATORS
Seth Hollander, MD
Lucile Packard Children’s Hospital
Shri Deshpande, MD
Children's National Medical Center
PANELISTS & DISCUSSANTS
Janet Scheel, MD
St. Louis Children’s Hospital
Anne Dipchand, MD
The Hospital for Sick Children
Ryan Davies, MD
Children's Health Dallas / UT Southwestern
Brian Feingold, MD
Children’s Hospital of Pittsburgh
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Please submit any questions that you would like for our presenters to discuss on the registration page.
Please register by September 9, 2021. Registration is free and open to anyone interested in participating. To join us, click below:
Upcoming EventsSeptember 9, 2021 (4–5pm ET) September 30, 2021 |
Cardiac Networks United presents NEW virtual education opportunities!QI Basics & Advanced Learning Health Network TrainingThe CNU QI Core is excited to announce that we will be offering several educational and training opportunities for network members who are interested in learning more about quality improvement methodology, tools, and processes. See CNU's flyer that outlines three tracks, including format, target participants, purpose, content overview, and schedules. The flyer includes registration links for both the QI Basics series and the Advanced Learning Health Network Trainingseries. The QI Orientation for Patients and Families registration link will be coming soon. |
Check it out!
Updated 2021 COVID-19 Resources for Patients & Caregivers
We have updated our website's COVID-19 page with the most current guidelines based on CDC recommendations in order to help keep patients and their families safe as kids are going back to school.
2021 Back to School Safety Tips for Pediatric Solid Organ Transplant (SOT) Recipients
How to Wear a Mask like a Health Hero (in 2021)
COVID-19 & VADS: How to Stay Healthy in 2021
Please visit actionlearningnetwork.org/covid19 to download and share these materials with your patients and caregivers.
NEW HeartMate 3™ LVAD ACHD Journey
Our new ACHD version of the HeartMate 3™ LVAD Patient Journey is now available on MyActionEducation.org.
Quality Improvement Updates
De-Escalation (Discharge) Project
The Discharge Committee Leaders are discussing how to discharge more patients and expanding the scope to include best practices for listing patients for transplant. Due to the pivot in project focus, the name is changing to “De-Escalation Project.” Data and more details for the project focus will be discussed in our upcoming committee meeting on September 1, 2021. Please continue to test the Flight Plan and Journey Map, and enter data into REDCap on any patients who have been discharged or transferred to the floor.
Stroke Project
The next discussion meeting will be held on September 2, 2021. During this meeting, we will discuss the new project plans for how we will review and discuss strokes, including some additional data collection occurring in REDCap.
Medication Titration Project
The project focus around optimizing and uptitrating medicines for heart failure patients is underway. Ten teams started collecting baseline data on August 19. The Meds Titration committee will use this baseline data to inform and create an ACTION recommended protocol.
Heart Function (Failure) Project
Heart Function is the new name for all Heart Failure committees and projects. In many cases, “heart failure” can improve with medications and appropriate therapies, therefore, ACTION has decided to use more inclusive and constructive terminology.
Teams continue to test the two interventions: a communication checklist and a discharge plan. We are aiming to reduce the length of stay for heart failure patients admitted to the hospital as well as decrease readmissions. The next meeting will be on September 28, 2021. Please continue to enter data into the enrollment REDCap for all heart failure patients, not only patients that have used the interventions.
Please see the NEW Heart Failure Data Entry infographic (below) to know when and where to enter data for this project.
Registry Database
Updates
Data Tip for Simplified Clinical
Some sites have been asking how to properly enter patients with multiple VAD implants into the Simplified Clinical registry. Below are the instructions for entering the data for subjects with multiple implants:
- Scenario 1: When subject has an explant and then re-implant within the same hospitalization, please continue to enter the data in the same record.
- Scenario 2: When subject is explanted for recovery, discharged, and then readmitted for an implant, please create a ‘new’ subject and enter the data in the newly created subject.
PowerBI
The new ACTION PowerBI environment is fully established with network wide and site specific reports. To access the environment, use the following link and login with your ACTION credentials:
https://app.powerbi.com/home?ctid=0af35862-78c9-45dd-9f55-70c76e0d813f
For any questions or issues logging in, email Kyle.
Patient Reported Outcomes
19 ACTION teams are signed up for Patient Reported Outcomes via the Tonic platform! We offered 2 trainings in July for teams to learn the VAD patient enrollment process and workflow for Tonic. For teams enrolled in this project, all materials are available on Basecamp, including the Tonic Training Video from from July’s trainings.
DMD
25 teams are now entering data, and 19 patients have been enrolled for DMD Data Entry. We also have two completed 6-month follow-up forms for the enrolled patients. Email us if you need access to enter data.
CardioMEMS
CardioMEMS data entry is live, and our first patient has been enrolled in the project! If you need access to enter data, email us.
