Patients deserve transparency

July 2015

BY DR. CHARLES D. FRASER JR., Surgeon-in- Chief, Texas Children’s Hospital

Mortality and complication rates for any health care topic, especially pediatric surgical procedures, are difficult to discuss, but we must not shy away. These statistics are more than just numbers – they are very meaningful, life-and-death data about our children, and we must approach this issue openly, honestly, and candidly.

The unfortunate truth is this data for any pediatric surgery is often not easy for parents to find nor is it easy for hospitals to assess. However, we believe the time has come for the public to expect transparent performance outcomes that are reported in a consistent, uniform way. It may be a matter of life or death for children with complex conditions.

As a pediatric heart surgeon and surgeon-inchief at Texas Children’s Hospital, families routinely tell me they had no idea where to turn when their child was diagnosed with a major heart defect or other condition that needed a complex surgical repair. Where do parents begin when trying to access information about which hospital and doctor to trust?

Surprisingly, until a few years ago it was nearly impossible to base that decision on how a hospital performed: how many procedures they did, what the mortality rates were, what the chances were for complications, etc. Families were left in the dark, forcing them to rely on word of mouth and well-meaning friends and familymembers who provided references based on who they “heard” was good. Parents would hand their child over to a hospital without knowing how well the hospital performed or even recognizing that outcomes between hospitals could vary so greatly. They didn’t know it was acceptable to question their doctors or to demand answers.

Why is this information so difficult for hospitals to provide? One reality is the logistics and resources needed to comb through thousands of medical records and years of data is both intensive and complicated. Significant investment is required in both people and infrastructure to accomplish this hard work, and getting the exact answers can be frustrating. But we have to start somewhere. We believe the best approach is for the health care community to simply dive in and start analyzing the data, procedure by procedure. It is not easy, and sometimes we may have to tell parents we do not have all of the information, but we owe it to them to at least explain as much as we can and what the measures do and don’t provide.

Over the past three years, Texas Children’s has dedicated an entire team of people to analyze each disease and surgical procedure with the goal of providing meaningful and understandable outcomes data to patient families. As the data becomes available, we aim to publish our results in various outcomes books both printed and online. The hospital invests hundreds of thousands of dollars each year to do this, but it is critical we share this information and frankly the responsible thing to do.

I encourage families to ask questions. I want them to challenge me, to ask the hard questions about the risk of death and the risk of complications for their child’s condition. I welcome honest conversations about how our hospital performs compared to other programs. I also support their seeking second opinions.

Our commitment to parents across the world is we will strive to be transparent and continue to provide outcomes data for all surgical conditions. We are not always perfect, but we are dedicated to transparency and making the outcomes conversation a part of our standard patient care routine. Even in situations where our outcomes are not where we want them to be just yet if we have the data demonstrating a problem, we still believe it is our duty to share it. Only in this way can we learn and improve for our children.