Transparency and Truly Informed Consent: A Modest Proposal

In a recent post on the ACC in Touch Blog, Robert H. Beekman, III, MD, FACC, chair of the ACC’s Adult Congenital and Pediatric Cardiology Section and Leadership Council, examines the principle of patient autonomy as it relates to informed decision making and transparency of medical data. “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).”

In an Expert Analysis on “Improving Outcomes and Quality Through Transparency,” Amy Basken, MS, also addresses transparency in medicine and patient outcomes from a parent’s perspective, stating that “accurate, accessible, understandable, and relevant information is critical to empowering parents, resulting in improved outcomes in both patient health and family experience.” In another Expert Analysis on “Transparency and Public Reporting in Congenital and Pediatric Cardiac Surgery,” Jeffrey P. Jacobs, MD, FACC, examines the mechanisms and significance of public reporting via the Society of Thoracic Surgeons Congenital Heart Surgery Database. Check out the Congenital Heart Disease and Pediatric Cardiology Clinical Topic Collection on for the latest clinical updates.