For Value-based Healthcare, Transparency is a Must; Especially for Congenital Heart Surgery.

Over the past few decades, the public has increasingly demanded value-based health care. In particular, they seek higher quality care at a lower cost. With the threshold for what constitutes acceptable value increasing, the ethics around patient autonomy have been extended to include a greater need for transparent information on not only cost but also quality.

This imperative for transparency is very compelling in the field of pediatrics, where many of the more serious medical conditions demonstrate great variation in treatment outcomes. This variation may be related to the patient or related to the care. Thus, it follows that there is a growing need for children's hospitals to share their treatment outcome data, adjusted for complexity, for as many diagnoses as possible, just because the variation in outcomes may be so great.

Nowhere is this truer than with neonatal congenital heart surgery, where even within the different congenital heart diagnoses, there is considerable variation in the anatomy.  And, as one would expect with such complex surgeries, there is a natural variation in quality of the team caring for these patients.

In the case of congenital heart surgery, we are fortunate to have the Society for Thoracic Surgeons (STS) Congenital Heart Surgery Database (CHSD). The STS established its National Database in 1989 “as an initiative for quality improvement patient safety among cardiothoracic surgeons.” The CHSD also annually makes public the four-year risk-adjusted mortality rate of institutions that voluntarily report to the database.

As detailed in a recent article in the New York Times, we are at a time when institutions and physicians’ concerns about such transparency are outweighed by the ethical rights of the patients and their families to the data. One-year risk-adjusted data would allow families and doctors referring to the program to make real-time, informed decisions about where the surgery could best be performed.

In the longer term, this may result in medium and smaller volume programs losing further volume and even needing to shut down or merge with larger higher volume and presumably higher quality programs. But this may be what is best, even if it requires transferring these patients to regional centers, causing inconvenience and hardship for the families of these vulnerable children. What is most important is that patients receive the highest quality care at the best cost possible.

The CHSD and its participating institutions should be applauded for their work on transparency. Now, more than ever, extending this work into one-year data is absolutely essential. It would also help to include data on complications associated with heart surgeries.

Finally, as we develop clearly-defined outcome indicators for other non-cardiac conditions, patients and their advocates need to push for similar levels of public reporting and transparency. With everyone working together in pursuit of a common goal, we can achieve the highest possible level of care for patients.