Wednesday, April 2, 2014

HLHS Collaborative: March's Action Period Call

The National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC) is preparing for its spring Learning Session - where parents and practitioners come together to discuss a range of topics and collaborate on how to transform care and identify best practices for HLHS infants.

If you've ever wondered what goes on backstage with NPCQIC, March's Action Period Calls focused on some of the "behind the scenes" work within the collaborative.   The call began with details about the monthly NPCQIC e-newsletter received by participating cardiac centers and parents.  There is some concern regarding the rate at which the newsletters are opened/read, however, each month, 80-90% of centers have at least one member utilizing the newsletter.  Centers and participants discussed with NPC leaders how the information shared via e-newsletters might be more effective.

Conversation quickly shifted to planning and preparations for the Learning Session taking place April 25th and 26th in Cincinnati. Centers will be busy doing their homework to prepare and sharing tools that others can learn from.

Both practitioners and parents are excited for the upcoming Learning Session, as parent participation has nearly doubled in the last six months and the parent voice will be paramount to driving discussion.  If you're an HLHS parent and interested in joining NPC-QIC Learning Sessions, please contact your cardiac center for details.  A list of participating cardiac centers can be found HERE.  If your center is not currently participating in the collaborative and you'd like to see their name on the list of "Participating Sites," please email with your name and care center.

For parents attending the spring Learning Session, an orientation call will be held next week to help newly attending parents feel comfortable in NPCQIC's process and in working with dedicated groups of medical professionals. 

For those who have attended a Learning Session in the past, please share your experience and for first timers, what questions do you have about what to expect?   Not able to attend? Don’t worry, updates will be provided via Twitter, ‪#‎NPCQICLS‬.

March's calls ended with an “unveiling” of the reorganized Collaborative SharePoint site. This site manages and stores NPCQIC's important information - tools that centers share and data for each participating cardiac center. The site is not available to parents - except for those on the Parent Leadership Team, but keeping with the theme of parent engagement, NPC involved a parent in the reorganization process.  The site looks much cleaner and is easier to navigate.

While we don't always see "behind the scenes," there is much work going on within NPCQIC, all of which assists centers to collaborate and engage in improved care for our children.

We're very much looking forward to seeing many of you in Cincinnati in a few short weeks!  Until then.... virtual heart hugs.