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O2-5.4 Overview and development for policies on sharing prospective epidemiological data
  1. Y M Chang,
  2. Z Chen
  1. Clinical Trial Service Unit & Epidemiological Studies Unit (CTSU), Nuffield Department of Clinical Medicine, University of Oxford, Oxford, UK

Abstract

Introduction With the establishment of prospective bio-bank studies around the world and need for better collaborative use of the resources, there is growing demand for open data sharing both from funders and the research community. However, there is no standard framework for their data sharing policies.

Methods From numerous websites and publications, we identified large (N≥50 000) well-established population-based studies of common non-communicable chronic diseases among adults' involving blood collection. A detailed review of their data-access policies (DAP) was undertaken using a structured form.

Results Fifty (34% US-led, 12% UK-based and 16% Chinese-targeted) studies were identified, of which 24 indicated data sharing. However, only nine studies made their DAP available online. Common components of these DAPs include: policy principles; data information and application procedures; evaluation criteria; timeline and process of data release; accessibility to data; output sharing and accountability. In most studies, the data were released for 1–3 years, after the research proposal was approved and the user agreement was signed. The data were released either without any charge, covered in a grant, or on a fee-for-analysis basis. Joint-authorship papers and open-to-public output are expected. Even when the studies were conducted in developing countries, most did not provide preferential access to researchers from there.

Conclusion A useful DAP should encompass complex issues ranging from ethical and legal to feasibility and practicability while remaining user-friendly to encourage collaboration. Giving consideration to researchers from countries involved in the study will promote international collaboration which will facilitate local research and enhance epidemiological knowledge.

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