Improving cardiovascular care and outcomes: cross-boundary clinical registries and quality indicators

Cardiovascular registries have provided infrastructures for the conduction of observational
and, in recent years, randomised research using routinely collected data. Clinical registries
help identify gaps in care deliver, disparities in practice and stimulate quality improvement.
However, the lack of integration between related registries increases the burden of data
collection and limits the ability to combine data from different sources. Thus, there is a need
to standardise the methods by which clinical data pertinent to cardiovascular disease (CVD)
are defined and the quality of cardiovascular care is measured across various settings.

The aim of this PhD is to harmonise the clinical definitions of the data variables for common
cardiovascular conditions and interventions. Such a harmonisation is a prerequisite for the
integration between cardiovascular registries and their interoperability with electronic health
records. Thus, routinely collected data may be efficiently utilised for conducting quality
improvement projects, high-quality clinical research and post-marketing surveillance of new
drugs and devices.

Under the auspice of the European Unified Registries On Heart Care Evaluation and
Randomized Trials (EuroHeart) initiative of the European Society of Cardiology (ESC), I led
the establishment of a methodological process for the development of data standards for
CVD. In addition, I applied this process and developed standardised clinical definitions for
several cardiovascular domains, including acute coronary syndrome, percutaneous coronary
intervention, heart failure, atrial fibrillation and transcatheter aortic valve implantation. I then
participated in the implementation of the developed standards into the EuroHeart IT platform
which has been adopted by a number of European countries.

Furthermore, I led the construction of a standardised methodology for the development of
quality indicators (QIs) for CVD. This methodology was used for the development of QIs for
a variety of cardiovascular conditions, including acute myocardial infarction (AMI), atrial
fibrillation, heart failure, CVD prevention and cardiac pacing. I then carried out external validation processes to evaluate the performance of some these QIs, such as AMI and heart
failure, using data from national registries in Sweden and the UK.

In conclusion, my PhD has been centred around the development, application and validation
of methodological approaches for the construction of data standards and QIs for CVD. Such
an endeavour not only addresses an unmet need in Europe, but also enables the conduction of
international comparative analyses and clinical trials across the continent. The results of my
PhD will provide a means for the generation of high-quality evidence that may help reduce
the burden of CVD and improve patient outcomes.