Transparency and Public Reporting: What Is It and Why Does It Matter?

Congenital heart disease can be complicated to navigate, especially when it comes to choosing care for yourself or your child. Working together to improve transparency, congenital heart programs, patients and families can improve outcomes and save lives. Congenital heart disease data may be complicated, but sharing information need not be so.

When you or your family member has congenital heart disease, it can feel like there are so many decisions to make, especially when faced with surgery or another medical procedure. During these times of stress, it is important to work closely with your medical team.

One key decision you will have to make is where you receive care. More and more information about hospitals is now available for the public to review, however, understanding this information can be challenging. 

Conquering CHD realizes there are many factors to consider for CHD patients and families when it comes to care and there is not a one-size-fits-all recommendation. Thankfully, there are resources available for patients and families to use when speaking with their care teams and advocating for themselves or their child. 

We recently spoke with experts at Children’s Hospital Colorado’s Heart Institute and the mother of one of their patients about the importance of transparency and second opinions. Watch the video below for an in-depth view at what transparency can look like.

Panelists:

  • Mary Kinkaid, mother of Jason, who is three years post-transplant
  • Dr. Cindy Barrett, Director of Safety and Quality Improvement, Heart Institute, Children’s Hospital Colorado
  • Dr. Jim Jaggers, Co-Medical Director, Heart Institute, Children’s Hospital Colorado, Section Chief, Congenital Heart Surgery, University of Colorado School of Medicine, Barton-Elliman Chair, Pediatric Cardiothoracic Surgery
  • Dr. Dunbar Ivy, Co-Medical Director, Heart Institute, Children’s Hospital Colorado, Chief of Pediatric Cardiology, Selby’s Chair in Pediatric Cardiology


Resources from Conquering CHD:

Hospital Navigator: https://www.conqueringchd.org/learn/hospital-navigator/

Pediatric Guided Questions Tool: https://www.conqueringchd.org/learn/guided-questions/

– En Español: https://www.conqueringchd.org/cuestionario-de-preguntas-guiadas/

Adult Guided Questions Tool: https://www.conqueringchd.org/guided-questions-tool-achd-edition/

– En Español: https://www.conqueringchd.org/cuestionario-de-preguntas-guiadas-edicion-achd/

https://www.conqueringchd.org/involvement/transparency/

Resources from Children’s Hospital Colorado:

Second Opinions for Pediatric Heart Conditions

Children’s Hospital Colorado experts in pediatric cardiology and cardiovascular surgery offer second opinions for a wide range of congenital heart conditions. They want you to be confident in your child’s care plan, especially when it includes surgery. From making sure the anesthesiologists know the correct medicines to give, to having highly specialized and dedicated pediatric cardiology nurses to help put your child at ease, Heart Institute experts encourage you to ask questions! Their doctors, nurses and surgeons have extensive experience diagnosing and treating children – and achieve some of the best outcomes (success rates) in the country. They offer second opinions so you can be sure about all these factors, and that you’re taking the best path forward.

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