Paul R. Barach – Pediatric and Congenital Cardiac Care (2 Volume set, 2015)

Описание

The idea that clinical data could be analyzed by multiple congenital heart
centers was shared by many enlightened individuals who foresaw the utility
of such an organizational structure in the early 1980s. Discussions led to
ideas that resulted in primitive data collection systems that catalogued diagnoses,
procedures, complications, and survival statistics. The diffi culty with
these systems was that the nomenclature was not uniform and the challenge
of comparing diagnoses and procedures prevented accurate analysis. In short,
nomenclature categories were diverse owing to substantial and justifi ed differences
of opinion by many leading anatomists. Parallel publications by surgeons
and cardiologists resulted in more uniform parochial nomenclature
systems, but still there were signifi cant differences between the two that challenged
future collaborative efforts. The call to arms was answered by concerned
clinicians and anatomists and resulted in a computer mapping strategy
that was successful in categorizing diagnoses and procedures by what is actually
described and performed and not by what it is called. As a result, the
types of ventricular septal defects, atrial septal defects, truncus arteriosus,
and the like now had a computer number and not a name. It was revolutionary
in concept and comprehensive in scope. It was as if the world had one language
even if the cultures varied. Before long, North and South America,
Europe, Asia, and Africa were using the standard nomenclature.
This was just the beginning. Data were collected, analyzed, and interpreted
to reveal or contradict theretofore clinical assumptions, biases, and
largely undocumented hearsay conclusions. Data verifi cation strategies by
professional volunteers were planned, and audit visits were instituted.
Concurrently, participating center data were to be assessed and compared
with the combined experience of the participating centers. This allowed the
possibility of program assessment and quality improvement. Complexity
scores were developed based on Delphian principles until the time that
enough data were collected to allow data-driven risk stratifi cation.
The subsequent analysis of the databases and the developed nomenclature
became exponential. Government agencies accepted the documents and instituted
registries based on the developed principles. Long-term outcome analyses
became a reality with database linking to both the Department of Health
and Human Services Centers for Medicare and Medicaid Services Database
and the Social Security Death Master File. Ethical issues were being discussed
and used to clarify rules and regulations. In addition to these
innovations, database documentation of complications has been used to guide the clinician to perform more extensive data-driven informed consent. In an
interesting twist of phrases, the database was used to inform the informed
consent process.
The benefi ts of the database systems and the supporting nomenclature
were simply too much to document in an expanded treatise. It could only
have been accomplished by a book, the like of which is offered in this informative
and excellent text. The reader will enjoy this book not only for the rich
references that accompany the prose but also for the enjoyable historical
account of what some people refer to as simply unbelievable.