Sharing health research data: National Institutes of Health (NIH) initiatives

Abstract

This paper presents a review and an analysis of health research data sharing policies and frameworks adopted by the institutes and centers of the National Institutes of Health (NIH), an American medical research agency. From a literature study of definitions and concepts approached in this study, the empirical research consisted in searches on the internet sites of the institutes, centers and the Office of the Director (central office at NIH) of initiatives to open access and sharing of research data. The responsible areas for these actions were located at the NIH Office of the Director and data sharing policies and repositories were identified in the National Library of Medicine (NLM) search directory. Then, an analysis of each one of these initiatives were carried out taking account: the main data policies adopted and their main objectives, kinds and levels of access and of published data, forms of insertion and contribution of data, whether or not codes of conduct are observed, main research areas involved, kinds of repositories (thematic or institutional). Final considerations provide inputs for discussions about different kinds and approaches to open access and scientific research data sharing, indicating suitable issues for future research developments.