The document outlines the efforts and objectives of several working groups associated with the National Institutes of Health (NIH), particularly focusing on the challenges and opportunities associated with managing, integrating, and analyzing large-scale biomedical datasets, commonly referred to as “Big Data.” Under the guidance of the Advisory Committee to the Director (ACD) and its Data and Informatics Working Group (DIWG), alongside trans-NIH and interagency initiatives, the effort is aimed at providing expert advice on both research and administrative data management spanning basic science, clinical, and population research domains. Key tasks include identifying and addressing issues related to data curation, integration of diverse datasets (such as molecular, phenotypic, and imaging data), and the development of predictive models for disease. The committee is also charged with proposing recommendations concerning policy, investments in standards and infrastructure, and the promotion of data sharing and collaboration within the biomedical community.
Additionally, the document discusses the process of gathering information from stakeholders to determine pressing challenges—such as data accessibility, standards development, support needs, and incentives for data sharing—which are critical to shaping NIH policy and future directions. The committee’s membership comprises experts from leading universities, the NIH, and research institutes, reflecting a multidisciplinary approach. Overarching themes emphasize the need for robust policies, metadata frameworks, tools, and a skilled workforce to address the human and technological dimensions of biomedical big data. The findings and recommendations from this group are expected to inform NIH’s strategic decisions related to the management, utilization, and sharing of large biomedical datasets.
