Tuesday, September 30, 2014

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 experessing 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.

 

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Previous Blog Posts

Tuesday April 21st, 2017: Parent Scholarships NPC-QIC 2017

Monday, August 8, 2016: On Finding His Tribe

Thursday, November 19, 2015: You're the General Manager

Monday, July 20, 2015: Fontan Care Package Launch

Monday, June 8, 2015: SBH Supports Full Transparency in Outcomes Data

Wednesday, May 6, 2015: New Care Package Items

Wednesday, April 29, 2015: A Tea Just for You: Heart Mom Comfort Tea!

Monday, March 2, 2015: Parent Travel Scholarships - NPC-QIC 2015 Spring Learning Session!

Tuesday, February 17, 2015: NPC-QIC/SBH Response to HLHS Statistics Shared by the CDC

Monday, February 2, 2015: Fundraising with Heart: Tink & Key

Thursday, January 29, 2015: January 2015 NPC-QIC Action Period Call Update

Wednesday, January 28, 2015: Fundraising with Heart: The Baby Blue Sound Collective

Thursday, December 18, 2014: Sharing HOPE: An exciting opportunity

Tuesday, September 30, 2014: HLHS Collaborative: September's Action Period Call

Tuesday, August 26, 2014: Parent Travel Scholarships - NPC-QIC 2014 Fall Learning Session!

Monday, August 18, 2014: CHD Kids and School Special Services

Monday, August 11, 2014: Using Crisis to Create: The Asher James Foundation

Wednesday, July 2, 2014: HLHS Collaborative: June's Action Period Call

Monday, June 23, 2014: Pink for Paul!

Friday, June 13, 2014: Why There are No "Brothers by Heart"

Tuesday, May 13, 2014: What If...

Wednesday, April 2, 2014: HLHS Collaborative: March's Action Period Call

Wednesday, March 5, 2014: HLHS Collaborative: February's Action Period Call

Saturday, February 15, 2014: Shopping for a Cause

Thursday, February 6, 2014: HLHS Collaborative: January's Action Period Call

Friday, January 17, 2014: Research Opportunity: Prenatally Diagnosed Moms Need Apply!

Monday, January 6, 2014: HLHS Collaborative: December's Action Call

Friday, December 27, 2013: Dual Perspectives: Growing Up with HLHS

Wednesday, December 4, 2013: Take Action: Be Part of the Solution

Tuesday, December 3, 2013: Join Millions for #GivingTuesday

Monday, November 18, 2013: A Mother's Perspective: The Other Sibling

Wednesday, November 6, 2013: A Unique Opportunity with What to Expect

Tuesday, November 5, 2013: Time to Vote!

Friday, November 1, 2013: 2nd Annual Sisters by Heart Avon Fundraiser

Thursday, September 12, 2013: Possibilities: Cord Blood Banking

Tuesday, September 3, 2013: A Unique Partnership

Tuesday, August 6, 2013: Fontan Series: Kylan's Story

Monday, July 22, 2013: Fontan Series: Lily's Story

Monday, July 15, 2013: Fontan Series: Aly's Story

Monday, May 13, 2013: A Heartfelt Donation: Medical Masks in Anya's Memory

Monday, April 22, 2013: Parent's Perspective: What to Pack for the Hospital

Thursday, April 18, 2013: Getting a 2nd Opinion: An Inpatient Perspective

Monday, April 15, 2013: Getting a 2nd Opinion: An Outpatient Perspective

Saturday, February 9, 2013: It's February, Celebrate Black History Month!

Monday, February 4, 2013: A Heartfelt Donation: eBay Foundation

Friday, February 1, 2013: A Unique Collaboration: SBH and the NPC-QIC

Monday, January 28, 2013: NPC-QIC Winter Learning Session

Friday, December 21, 2012: A Mothers Perspective: Feeding issues

Wednesday, December 5, 2012: A Heartfelt Donation: Smart Mom Jewelry

Sunday, November 18, 2012: Heartfelt Donations: aden + anais and The Dorsett Family

Tuesday, November 13, 2012: Gifts from the Heart: Stella & Dot

Monday, November 5, 2012: Creative Donors: United Way Workplace Campaigns

Sunday, November 4, 2012: A Mother's Perspective: Healing a Hurting Marriage

Sunday, October 28, 2013: A Heartfelt Donation: Avon

Saturday, October 27, 2012: A Gift for Our Fighters

Monday, October 15, 2012: Stories of Hope: Tyler Sajdak

Monday, October 8, 2012: A Heartfelt Donation: The Mended Heart

Monday, September 24, 2012: Fun in the Sun: Year Two

Sunday, September 16, 2012: Creative Moms: Warrior Scrapbooking

September 11th, 2012: Remembering Our Heroes

June 6th, 2012: Top Ten Discharge List