The National Heart, Lung, and Blood Institute (NHLBI) convened a Working Group meeting on January 13, 2015, in Bethesda, MD, to explore issues related to data integration within the congenital heart disease (CHD) research, clinical, and quality improvement communities. The goals of the Working Group were to develop a vision for an integrated data network for CHD research and identify the critical elements for achieving that vision (e.g. data standardization, governance, integration and storage methodologies) and potential barriers. These goals support NHLBI Strategic Plan Goals 1, 2, and 3. The Working Group consisted of experts in pediatric and adult cardiology, pediatric cardiothoracic surgery, epidemiology, informatics, and statistics.
Prevailing trends in biomedical research include decreasing federal research budgets, and at the same time an increasing availability of data captured in multiple sources. The first trend is driving innovation in the second by emphasizing the need for better integration, management, and use of available data in order to conduct research more efficiently. By aggregating data from heterogeneous data sources and from large numbers of patients, the application of certain “big data” techniques in medicine holds the promise of facilitating new research, conducting research more efficiently (for example, the use of registries as a platform for clinical trials), answering public health questions, and serving as the foundation for a learning health care system.
The current data environment in CHD research has many assets. These resources include numerous clinical registries, administrative and clinical research data sets, quality improvement databases, electronic health records, and others.
A number of independent efforts are working on various aspects of developing an advanced data architecture and better data integration in the field of CHD research. These include developing data standards and definitions, and employing various methodologies for certain data linkages within and across hospital systems.
However, most CHD data sources currently remain siloed with relatively limited integration at the patient, health system, or national level. In addition, aspects such as data governance and sharing policies, IT strategies for the development of more widespread data integration, and solutions to foster collection of longitudinal follow-up and population-based information across the lifespan have received more limited attention to date.
The Working Group discussed a number of topics related to data integration including:
The Working Group made several recommendations to further the efforts of data integration in the CHD community.
The Working Group committee will develop a report of the meeting for publication in an appropriate professional journal.
Division of Cardiovascular Sciences
Jonathan Kaltman, MD