Dear Community,
ACTION remains very active as we transition to a more chronic phase of COVID-19, and begin to normalize some of our institutions, including healthcare delivery.
ACTION work on patient and provider education is ongoing with an anticipated launch of the learning management system in late Summer. See Basecamp for details. There is also progress on the Heart Failure front, as we are working towards a PHIS-ACTION data extraction, and planning initial QI work in this area. Additionally, spurred by COVID-19 but also extending far beyond the immediate crisis, we are working together with PHTS to develop a cohesive approach to telehealth as it can be applied to VAD, waitlist and transplant care.
On July 9th, we are very excited about hosting the second in our new virtual series ACTION Learning Sessions. Led by David Peng, these will focus on a variety of timely and timeless topics, starting with a look at Fontan VAD patients. Kurt Schmacher will be presenting Advanced Heart Failure Consultation: When and Why Should We Refer a Fontan Patient?
As always, stay healthy and well!
Regards,
PATIENT FAMILY STORY
A Family of Big Hearts
The Binghams have 5 children, 3 of which have had heart transplants (Sierra, Lindsey, and Gage). Two of their three children with transplants were also on VAD’s as a bridge to transplant; Lindsey was on a Berlin Heart and Gage was on a HeartWare HVAD.
The Bingham family graciously shared their amazing story with ACTION over the last month on our social media platforms and on our Patient Stories blog. The Bingham’s journey began in 2006, and they continue to inspire us and further their advocacy efforts in our VAD and Heart Failure community to this day.
READ THEIR STORIES
Advanced Heart Failure Consultation: When and Why Should We Refer Fontan Patients
Thursday, July 9, 2020 | 4:00 PM Eastern
Kurt Schumacher, MD
Speaker:
Kurt Schumacher, MD – C.S. Mott Children’s Hospital
Moderator:
Danielle Burstein, MD – Children’s Hospital of Philadelphia
Make sure to submit a question or topic you want to discuss during our learning session. Please submit it on the event registration page.
________
Expert Panel and Discussants:
David Rosenthal, MD – Stanford/Lucile Packard Children’s Hospital
Kathleen Simpson, MD – St. Louis Children’s Hospital
Jonathan Menachem, MD – Vanderbilt, Monroe Carell Jr. Children's Hospital
And YOU!
Please register by July 7, 2020. Registration is free and open to anyone interested in participating. To join us, click below:
New Video Featuring the Sprague Family!
ACTION has been working to reduce stroke rates in pediatric VAD patients since 2018. We rolled out a standardized quality improvement bundle, called the ABC's of Stroke Prevention, to manage Anticoagulation, measure Blood Pressure, and improve Communication.
This work has changed outcomes for our ACTION patients and families, and has especially touched the hearts of the Sprague Family!
Upcoming Events
July 9, 2020 (4 PM Eastern)
ACTION Virtual Learning Session
Advanced Heart Failure Consultation: When and Why Should We Refer Fontan Patients?
More Info | Register
August 18, 2020 (3–5 PM Eastern)
Cardiac Networks United Virtual Conference
Health Disparities in Pediatric & Congenital Cardiology: Understudied & Undervalued
See save the date below - Zoom registration link to be emailed and available soon.
October 4–7, 2020
30th Annual International Symposium on Adult Congenital Heart Disease
(rescheduled from June 2020)
ACTION Happy Hour & Meeting (TBD)
Cincinnati, OH
More Info
Registry Database
Updates
Quarterly Report
DCC will be sharing the network-wide, 3rd quarter reports. This report will include data from the 28 sites. Centers with more than 25 accrued patients will also receive a center specific report soon. Please stay tuned.
Thank you all for continuing to respond to queries and questions from the DCC.
Email us: ACTION.DCC@cchmc.org
Quality Improvement Updates
COVID-19 Calls
Thank you to those who continue to share learnings and experiences on the weekly COVID-19 calls with ACTION and PHTS! These calls are now moving to bi-weekly, with the next call on July 2, 2020.
Discharge Committee
The latest discharge data was shared on the last ACTION for All call, and updated data will continue to be shared periodically. The next Discharge Committee meeting will take place on July 8, 2020. Please continue to test the Flight Plan and Journey Map, and enter data in REDCap on any patients who have been discharged.
Stroke QI Project
Leadership is diving into the Stroke QI work to better understand how we can reduce strokes even further. New interventions are being discussed with the plan to re-launch the stroke reduction work in the next few months. Please continue to enter data into REDCap for your VAD patients in the meantime.
Telehealth Project
The telehealth QI project team continues its design work. The improvement project process is outlined below for reference. This project is currently in the design phase highlighted by the orange circle. Two telehealth working groups are in the midst of developing interventions for defining which patients qualify for virtual visits and making education materials for care teams and patients/families. Measures are actively being developed, with the hope to begin collecting data and testing interventions in August.
Continued thanks to Matthew O’Connor, MD, Deipanjan Nandi, MD, and Robert Gajarski, MD for leading this new group!
