In response to conversations at our 2019 Summit on Transparency and Public Reporting last fall, PCHA submitted a letter to US News Editorial Staff, expressing the concerns of the patients and families we serve regarding the challenges of ranking hospitals. We are pleased that we were able to have a constructive follow-up conversation with them this week. Although we don’t believe the rankings are going away anytime soon, we are confident our concerns have been heard. We wanted to share this letter with you.
December 13, 2019
Pediatric Congenital Heart Association (PCHA) is the voice of the congenital heart disease (CHD) patient. Founded in 2013 by parents of patients, every staff member and volunteer are either a patient or family member of a patient. We take great responsibility in advocating for the needs of the CHD patient across the lifespan, in addition to including their full support system, something that simply did not exist ten years ago.
In today’s landscape of rapid information consumption, U.S. News and World Report remains the most recognizable source of information for patients and families, especially those making healthcare decisions under great stress or during emergencies. If the aim of U.S. News’ publication is to provide value in this decision-making process, we urge you to eliminate the use of rankings when communicating congenital heart surgical data.
At face value, which patients and families strongly rely upon, these rankings can be dangerously misleading, significantly increasing the chances of
- Erroneous and costly decision making,
- Unnecessary differentiation between congenital heart surgical centers, and
- Inaccurate representation of whether a center is suited to the specific needs of the patient.
A system that neutrally provides program and outcome data would best serve congenital heart patients and families.
This sentiment from the patient and family community became loud and clear at our 6th Summit on Transparency and Public Reporting of Pediatric and Congenital Heart Disease Outcomes. In response to events at centers across the country, brought to light through media reporting, PCHA created this summit series intended to develop a thoughtful and actionable approach to transparency and public reporting across the field of congenital cardiology. Aimed at consumer access to critical, reliable, timely and understandable data for themselves and family members with congenital heart disease, multiple stakeholders in the CHD community have attended, including Mr. Harder.
Each year, a growing number of patients and families have attended the summits. At our 6th Summit held this October in Columbus, Ohio, patients and families represented 50% of attendees. It was during this year’s summit, after Mr. Harder’s presentation on U.S. News’ 2019 Best Hospitals for Pediatric Cardiology & Heart Surgery, that numerous break-out conversations and discussions occurred. Patients and families overwhelmingly called for the removal of traditional rankings.
Each of the three points bulleted above are deeply intertwined and reflected in the comments from families. Here is an example of costly decision-making proposed by one parent:
“My family lives in Wisconsin, 90 minutes from a surgical center currently ranked 29th. Our child has a complex defect, so we are always thinking about the next possible surgery. We annually review the rankings of hospitals as we want to be sure our child goes to the best center. This year, we discovered that we have family in Florida near the hospital ranked 11th. Should our son need surgery this year, the rankings suggest that we should split up our family, take leave from our jobs, and pay out-of-pocket for travel, food and housing costs, so we can be at “the best” center for complex surgery. Only, how would we have known to look past the rankings at number and type of surgeries performed to better understand that the hospital in Florida is not the best suited for our child? That hospital, ranked 11th, performs 2/3 the number of surgeries that our nearby hospital, ranked 29th, performs. Not to mention, the new surgeon in our nearby hospital specializes in the type of defect our son has. The rankings may have led us to make a decision that could have cost us dearly, both financially and with the health of our child.”
When considering how the rankings confuse patients and families, a young patient’s mother stated,
“Ranking systems unfairly penalize hospitals and influence families by creating a situation in which families are led to believe their hospital is not as good as another, based on statistics that may not actually have anything to do with how well the hospital cares for children with cardiac issues.”
Another parent shared a similar sentiment:
“The ranking system needs to come to an end because it is being treated as a glorification process, a “which sports team is best” way of looking at things. When in reality, we need to be moving towards a more standardization of care. So, families in states with hospitals that have poor outcomes aren’t feeling like their only choices are which one is less “bad” than the other, or traveling where they have no support system.”
We also feel the opposite is equally risky, where patients and families may incorrectly believe that a hospital is better able to treat a patient based on a rank number, than on information specific to the patient’s needed intervention.
“The ranking system makes most families believe that only the very top few are good and safe hospitals, when in reality we have many safe hospitals. The rankings scare families and, in many cases, cause them to travel far away unnecessarily. Families should absolutely know if their child is not safe at their home hospital, but being at a safe and competent hospital at home, or at least close to home, is a major factor in the entire family’s well-being.”
A parent of two adolescent CHD patients acknowledged the overall shortcomings of rankings and the commonplace use of this methodology in popular culture.
“I am worried as my adolescent children transition to self-advocacy and managing their own care, that they will see a Top 10 ranking and stop there. This method of conveying ratings is so popular right now. How will patients know if information shared is trustworthy or just another Top Ten List? How will they know if a particular surgical center is able to safely treat their specific defects and disease?”
Whether patients and families are reviewing U.S. News rankings, talking to their cardiology team, or visiting hospital websites, they each want to know one thing. Will I (or my family member) be safe if I have surgery at this congenital heart center?
“As a family, we just want to know if the center is safe for treating our child’s specific condition. We do not always understand the difference in rankings and the numbers behind the rankings, but knowing whether our child is safe is something we cannot do without.”
We are grateful for the responsiveness that U.S. News has shown in the past, resulting from the feedback received at these summit meetings. This includes the utilization of an outcome metric to replace hospital reputation, adding a survey question about whether a center publicly reports, and improving the visibility of the volume of complex surgery metric.
Please consider opportunities where we can continue to work together to inform your public reporting efforts, better reflecting the needs and goals of CHD patients and families. We hope that you will continue to participate in our Summit Series and in addition, we can further support information gathering through mechanisms like survey dissemination or convening focus groups.
On a more personal note, as leaders at PCHA we truly want to convey how serious and important decision-making is for the CHD patient and family. When we discovered our children had CHD, 16 and 14 years ago, respectively, we were completely emotionally and physically overwhelmed. We felt as though we were drinking from a fire hose as we desperately tried to learn all that we could have our childrens’ heart problems. At that moment in time, what mattered most was whether our children would live or die. Increasingly, with improved early detection, families are afforded valuable time to make important decisions ensuring their child achieves the best outcomes possible. Each defect is unique, requiring individualized treatment. As the CHD community moves from survive to thrive, the quality of this care cannot be effectively communicated in a number or ranking.
We deeply appreciate the desire of U.S. News to maximize the benefit of their impact and hope to continue to partner in ensuring congenital heart disease patients receive accurate and non-biased information, allowing them to advocate for healthcare needs over their lifetime. Representing the patient and family voice, Pediatric Congenital Heart Association respectfully requests elimination of the congenital heart surgical rankings, in favor of a system that neutrally provides program and outcome data, in an effort to accomplish this goal.
David M. Kasnic Amy E. Basken
Executive Director Director of Programs