C-D3-04: Governing Access to a Distributed Research Network’s Data Resources

摘要

To answer many public health questions, it is essential to use information from more than one electronic data system, and efficient ways are needed to securely access and use data from multiple organizations while respecting the regulatory, legal, proprietary, and privacy implications of this data use and access. One approach centers on the development of distributed research networks that allow data owners to maintain confidentiality and physical control over their data, while permitting authorized users to ask essential questions. Once such a network is fully operating and key elements are in place, sharable data resources can be made available to approved network users, under approved conditions. For instance, data from a large cohort of hypertensive patients with five years of utilization (a hypertension cohort) could be available on the network. The following questions will need to be addressed: Who can have access? Under what conditions should access be granted? What policies/procedures are required? To address the specific needs associated with governance of a network's resource(s), the authors call for the establishment of user eligibility requirements, policies to deal with funders (i.e., access rules for study funders), clear standard operating procedures, and guidelines for accessing the network. Recommendations to meet to those needs include: establishing data oversight policies; defining responsibilities for data resource access; defining responsibilities for data owners at each site (i.e., responding to queries when requests come in); creating standard operating procedures for the data resource; creating collaboration guidelines for external partners; and monitoring overall resource use. For the purpose of this poster, we propose to illustrate responsibilities for data owners at each site.