This post was authored by Robert H. Beekman, III, MD, FACC, chair of the ACC’s Adult Congenital and Pediatric Cardiology Section and Leadership Council.

A fundamental principle of patient-centered care is patient autonomy.  Essentially, this means that patients are respected as independent agents who make informed decisions about their health care. Of course, informed decisions are evidence-based and therefore require data. No data = no informed decisions. Clinicians have an ethical obligation to respect and to promote patient autonomy.

Transparent sharing of medical data is a hot topic in 2015. Patients are pleading for it. But the concept of transparently sharing outcomes data with patients has elicited concerns from many outstanding, well-meaning clinicians: transparency may be misleading if the data aren’t perfect (complete and accurate); the data must be risk-adjusted; the data must be context-adjusted; there is uncertainty regarding exactly what data should be shared. These concerns are reasonable of course, and must be addressed before the system can become fully transparent. However, “waiting for perfect” will lead to paralysis.

Some help is on the way:  recently patients and families published suggested questions for patients to ask their pediatric cardiac centers. These questions are intended to help future patients and families obtain data to help inform their health care decision making. The Pediatric Congenital Heart Association “Suggested Questions To Ask Your Cardiac Team” can be accessed here.

A second list of questions specifically for families whose children have hypoplastic left heart syndrome was developed by Sisters-By-Heart and the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) and can be accessed here.

It would seem advisable for pediatric cardiac surgeons and cardiologists to prepare their data to answer such queries from future patients.

As a modest proposal, I suggest that physicians and surgeons consider modifying their procedural Informed Consent Forms to explicitly address the fact that informed decision-making requires data.  This statement, or a modification, added to Informed Consent Forms could go a long way in addressing the important issue of patient access to data:

“Dr. XX has provided me with his/her outcomes data for this procedure, performed on patients similar to me (or my child).  He/she has explained these data, I understand them and my questions have been answered.  I consent to Dr. XX to perform this procedure on me (or my child).”

This modest modification of the patient Informed Consent Form would help to secure patient access to relevant data, and would help our complex health care system respect patient autonomy by assuring that consent is truly informed.

< Back to Listings