Congenital Heart Disease (CHD), and all of the many decisions that go along with it, often feel like a complicated machine with too many moving parts. We’re here to help patients and families.
CHD can be complicated. For many patients and families, the CHD journey, especially CHD care, can feel like a complicated machine with too many moving parts.
With the proper resources and tools, however, each part of the machine falls into place and the machine can operate smoothly. Each tool or resource is just one gear in the CHD care machine for patients and families facing congenital heart disease when making crucial decisions including where to receive their CHD care.
Some of the many cogs in the CHD machine include:
- The patient
- Their family and support system
- The care center
- Insurance coverage
- Support organizations like Conquering CHD
- Available resources
One tool patients and families may be familiar with is the US News & World Report Best Children’s Hospitals Ranking program. Understanding the information contained in the rankings and what it means for their specific case can be a challenge for families. Some may interpret the rankings to be a true reflection of the quality of care they might receive at a given center, but in truth, the rankings only provide some of the picture – one part in the CHD care machine.
In 2021, we shared some of the changes to the hospital ranking Program as a result of our advocacy efforts, including the public disclosure of their process for how the regional rankings are applied. We continue to work with U.S. News and World Report to make meaningful changes to the rankings program and advocate for patients and families to have access to accurate information that will help them make the best decisions possible.
With the publishing of this year’s rankings, we remind you this is only one of many tools you can use to have a conversation with your care team and should not be used as the sole factor when making decisions about your care.
It is hard to capture all the details of what goes into a ranking system, and we ask parents to use caution when using the rankings alone to compare two hospitals. Ranking programs, like that of the US News and World Report, often use their own methodologies with their own criteria to “rank” heart programs throughout the country. And while they use multiple data points to arrive at their rankings, as well as using objective standardized outcome metrics from the Society of Thoracic Surgeons (STS), both of which are welcome additions to the tool, these rankings can be misleading for patients and families with regard to a center’s outcomes and performance in certain specialties.
We encourage all patients and families to use this tool, along with other resources and care team expertise, when making important treatment decisions. Where to receive care is one of the most important decisions a family can make. Conquering CHD has a strong commitment to transparency and ensuring patients and families have essential information at their fingertips when they need it to assist them in making the best choice for their families.
We provide several crucial resources to help patients and families make informed decisions; each contributing its own gear to help the CHD decision-making machine run smoothly. Our Hospital Navigator takes existing data from participating centers and presents it in an easy-to-understand format to help guide discussions with potential care centers. We also urge parents to ask questions about what an individual center’s data means specifically for their diagnosis, like those found in our Guided Questions Tool. Make sure you have ALL the parts of the machine moving together before making decisions about your care or the care of a loved one.
The work continues. These important changes at U.S. News indicate our voices are being heard. They are an important step to improving how patients and families access information about hospitals close to them. If you would like to join our advocacy efforts, sign-up for our email list on Transparency and Public Reporting. Be the first to receive news on the annual Summit, in addition to calls to action.