HLHS Collaborative: September's Action Period Call

After a two month hiatus for centers to regroup with their quality improvement teams, the Action Period calls resumed this week.  Discussion revolved around valuable work which continued over the summer months and important preparations for the Fall Learning Session.

The calls began with a review of data (mortaility and daily interstage weight gain) which is driving the current improvement work within the collaborative. Following data discussions, parent travel scholarships were announced to collaborative members, followed by an excellent discussion regarding how centers are funding parents to join them at the Learning Session. A number of centers identified local charities or non-profit groups that assisted in funding; others were able to emphasize to the powers that be the importance of parent involvement and secured funds through their hospital.  Happily, more and more hospitals are recognizing the value parents can provide and it is becoming much more commonplace to fund parent partners to attend the Learning Sessions.  

Advocate Children’s Hospital uses a combination of the above funding methods and selected parents who demonstrated commitment to their local group. If you're interested in the collaborative and quality improvement work, parents suggest you get involved with your local hospital - either on a parent advisory council, directly with your cardiac center's quality improvement team, or spark a conversation with your child's cardiologist expressing your interest in becoming more involved with NPC-QIC.
 

After a creative funding discussion, the call shifted toward the Transparency Workgroup.  The workgoup recommended to centers that the Collaborative begin sharing collective performance measures on the NPC-QIC website (these measures represent combined data from all the centers in the collaborative and do not represent any one center).   The workgroup brainstormed and created an  infographic to highlight the Collaborative's progress to date. Some of the data points included in the infographic are:  

• number of patients in the registry

• mortality rate (expressed as survival)

• growth rates

• readmission rates

• parent engagement

• who are collaborative members 

The Transparency Workgroup is excited to reveal the infographic (once beautified by graphic designers) in the coming weeks.  Stay Tuned!
September's Action Period call ended with a Learning Session preview and "homework" for cardiac teams prior to attending in November.  We'll just say, the Learning Session will be engaging - for both parents and clinicians - and a lot of good information will be shared and discussed. 

If you have the ability to attend the upcoming Learning Session in Cincinnati (November 7-8), we'd love to see you there.  To register for the Learning Session as a parent, please visit:  http://events.r20.constantcontact.com/register/event?oeidk=a07e9kkxcx92230dff1&llr=kdgqiilab

If you're not able to attend, keep an eye on social media where Sisters by Heart, parents, and clinicians will be updating on the events of each day!  Get Twitter updates using #NPCQICLS and Facebook updates at Sisters by Heart and HLHS Parent Advisory Page.