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Hospital Navigator: History, How To & Advocacy

Hospital Navigator is Conquering CHD’s newest resource for patients and families, and launched on August 5th.

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. 

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.

For six years, through our Summit on Transparency and Public Reporting Series, patients, families, and providers have worked collaboratively with Conquering CHD on a solution to understanding surgical data.

Hospital Navigator is a giant step towards helping patients and families understand surgical outcomes and have necessary conversations with their care team. It takes existing data and presents it to patients and families in ways they can understand and are useful in care team conversations. Hospital Navigator is just one tool in the decision-making puzzle and patients and families should fully review the educational material prior to accessing.

What Hospital Navigator Does Not Do

The information on Hospital Navigator does not give enough detail to understand what it means for your exact congenital heart defect or procedure. It does not cover every scenario and does not always account for variations in surgical procedures, a patient’s CHD diagnosis, or a patient’s additional diagnoses. Click here for more information about the limitations of these data.

This site was not designed for you to directly compare one hospital to another.

The information on this site is not from today. Most of the information is collected once a year and some numbers may include data that was collected up to four years ago. Pay close attention to dates on Hospital Navigator. Important changes may also happen at a hospital during the time periods indicated that should be taken into consideration.

Understanding the Numbers

Understanding congenital heart surgery information that is available to the public can be very complicated, even for people who work with these numbers all the time. We realize you may find that some of this information is difficult to understand. However, it is important information and we encourage you to discuss it with your medical team. The following resources may be helpful:

Words to Know: Heart Glossary
Making Sense of Congenital Heart Surgery Data

What’s Next?

Save this information. Print it out. Take it with you when you talk to your care team. Review the toolkits below. Use Hospital Navigator in combination with our Questions to Ask Your Care Team tool. Advocate for your center to share their data!

The Patient and Family Toolkit includes the following resources:

  • Frequently Asked Questions
  • Advocating for Your Center to Participate
  • List of Participating Centers

You may download it here. Last updated September 28, 2020

Resources specifically for providers are also available:

Now that you’re ready…

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