Dear Community,
We hope you enjoyed a Happy Thanksgiving with your families. Our ACTION community grows larger each year, and we are thankful for each and every one of you! ACTION's Executive Leadership is wrapping up strategic planning for 2022 and we look forward to what we anticipate will be a productive and rewarding year. We also have a new summary of our mission, core values, and initiatives for improving patient and network outcomes (see below). All of this is made possible through each individual’s contributions and collaboration – THANK YOU!
Regards,
Is More Better? Pediatric HF Medication Titration & Lessons Learned from Adult HF Experts
Thursday, December 9, 2021
4:00 PM Eastern
Featured Presentations
Current state of pediatric HF therapies
Deip Nandi, MD
Nationwide Children’s Hospital
Joseph Spinner, MD
Texas Children’s Hospital
Practical steps and strategies for initiating GDMT in the hospitalized patient with decompensated HF
Michelle Kittleson, MD
Cedars -Sinai
Practical steps and strategies for optimization of GDMT in the ambulatory HF patient
Andrew Sauer, MD
University of Kansas Medical Center
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Please submit any questions that you would like for our presenters to discuss on the registration page.
Please register by December 9th. Registration is free and open to anyone interested in participating. To join us, click the link below:
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For more information or upcoming topics visit our Learning Session page.
Upcoming EventsDecember 9, 2021 December 16, 2021 April 26, 2022 – SAVE THE DATE! ACTION (In Person) Meeting at ISHLT 
April 26–30, 2022 |
Bring your favorite holiday treat and learn how to tweet!DECEMBER 16th | 4PM ET We'll share tips and strategies for building your professional network and presence on Twitter. We'll help create engaging conversations by exploring Twitter basics and crafting effective and valuable posts — helping you learn from and promote important research on Twitter to create your own vibrant and connected social media community. |
Check it out!
OmniLife and ACTION Solidify Collaboration to Drive Innovation
OmniLife, a health technology communication and collaboration platform, has finalized its formal collaboration with ACTION. The organizations will work together to drive innovation around patient care and clinical decision making, specifically with the goal of improving outcomes for children with heart failure. Read the full press release here.
ACTION Collaborative Summary
We have a new 1-page summary document outlining our mission, key values, and initiatives for improving patient and network outcomes. Thank you to all our ACTION members for all your efforts in making this work possible!
Welcome Toni!
Toni Duganiero joins the team as ACTIONS's newest Senior Data Management Specialist.
A message from Toni:
I first started at CCHMC in 2014 as a Data Management Coordinator for Every Child Succeeds. I provided data for their funders, quality improvement, internal management, and program outcome evaluation. I transitioned to Division of Biostatistics and Epidemiology in 2018 where I was exposed to more data management needs from various researchers and projects. In 2020 I was welcomed into the Anderson Center as an Analyst II with Improve Care Now. In all my roles, I have been responsible for understanding and validating statistical processes and offering best options for development of reports; creating/managing REDCap databases; serving as point person for data requests; identifying data solutions and working with programmers to automate data reporting and tracking; and providing analytic consultation. SAS and REDCap are my best friends!!
Outside of work, I spend most of my time hanging out with my 3½ year old son Alexander. We love to be outside and are an active family. Park hikes are a weekly occurrence! I also have 2 dogs, a mini schnauzer and a giant schnauzer that keep me very busy too. I’m a family girl so if you can’t find me at home then I’m with my sister or at my parents’ house hanging out!
I’m thrilled to start my new role and cannot wait to meet everyone!
Quality Improvement Updates
New Monthly VAD Measures Survey
We have instituted a new monthly REDCap survey for self-auditing of VAD implants. The survey also contains a few questions about our quality improvement measures. This was launched on September 8th and was sent to PI’s and VAD Coordinators at ACTION centers. Keep an eye out for the December survey coming soon! Just like everything we do, this will be a PDSA and we would love feedback.
De-Escalation (Discharge) Project
The De-Escalation/Discharge Committee Leaders are continuing discussions around how to discharge more patients and expanding scope to include site specific work on transplant criteria and getting home before transplant. We have a NEW ACTION Flight Plan tool that teams are testing. The next committee meeting is on December 1st. Please continue to test the new Flight Plan and Journey Map. This project is open to all sites in ACTION. If you would like to participate in the new project scope, please email us to let us know!
Stroke Project
The next discussion meeting will be held on December 2nd. The new stroke REDCap and the case presentation PPT template have been finalized. We are reaching out to sites that have submitted stroke events to schedule them for upcoming clinical discussion meetings. By reviewing each individual stroke event we hope to reduce stroke rates even further for VAD patients. Please continue joining us for our stroke meetings the first Thursday of each month from 4:30–5:30pm EST. Please email us with any questions!
Medication Titration Project
The project focus around optimizing and uptitrating medicines for heart failure patients is underway. Baseline data collection ended in October and Pilot Testing will begin early 2022. The Meds Titration committee will use the baseline data and pilot testing to inform and create an ACTION recommended protocol.
Heart Failure Project
Teams continue to test the two interventions: a communication checklist and a discharge plan. We are aiming to reduce length of stay for heart failure patients admitted to the hospital, as well as decrease readmissions. The next meeting will be on January 25th. 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 to know when and where to enter data for this project.
Registry Database
Updates
Response Times for DCC
Have a question about data entry? You can contact the ACTION DCC any time for Simplified Clinical or REDCap data entry questions. Please allow 7–10 business days for a response from the DCC.
Simplified Clinical
We have 718 VAD patients enrolled in the Simplified Clinical database as of 11/08/2021. Thank you for all your efforts.
Update to Simplified Clinical User’s Manual
We recently made a change to the timeframe to collect data for the 6 month follow-up form to “+/-2 weeks.” This is a broader range to include relevant data.
Patient Reported Outcomes
19 ACTION teams are participating in Patient Reported Outcomes via the Tonic platform! E-Consent and PRO enrollment for VAD patients are active and PRO data is being collected from patients and families. Important note for participating teams: Maryna Shykova has transitioned her role at Tonic to Andrew Brytan. If you need any technical support from Tonic or need to stop patient surveys for any reason, please email Andrew directly.
DMD
25 teams are entering data and 34 patients have been enrolled for DMD Data Entry. We also have 2 completed 6 month follow-up forms for the enrolled patients. If you need access to enter data please email us.
CardioMEMS
CardioMEMS data entry is live and we have 3 patients enrolled in the project! We also have 1 submission for the 6 month follow-up form for the enrolled patients. If you need access to enter data please email us.
Fontan Referral Tracking Project
We have 80 patients enrolled in the Fontan Referral tracking project! We also have 70 completed 30-day follow-up forms for the enrolled patients. For sites that have been entering this data, we have 12 incomplete 30-day follow-up records. Please check your form completion status and submit these forms at your earliest convenience. If you are interested in entering data for this project please email us.
