Federal Data Sharing Requirements and Issues: Contributions to be Made by Statistics, Survey Research, and Related Disciplines

• Activity Number: 403
• Type: Topic Contributed
• Date/Time: Thursday, August 12, 2004 : 8:30 AM to 10:20 AM
• Sponsor: Section on Government Statistics
• Author(s): Virginia A. de Wolf*+
• Companies: Consultant
• Keywords: NIH ; NSF ; HIPAA ; statistical disclosure limitation methods ; accessing confidential data ; data protection

Abstract

Beginning Fall 2003 the National Institutes of Health (NIH) required that all funding proposals requesting over $500,000 in direct costs in a year include specific plans for data-sharing. These plans must safeguard the privacy of participants and protect confidential and proprietary data. The National Science Foundation (NSF), another major federal source of research funding, has a policy which strongly encourages the sharing of data collected by NSF grantees. And the Privacy Rule of the Health Insurance Portability and Accountability Act (HIPAA) permits the sharing of "protected health information" with or without patients' authorization. Researchers applying for NIH and NSF grants, as well as those requesting data under HIPAA, need to know about methods used to protect confidential data (termed "restricted access" and "restricted data"). The purposes of this paper are to briefly describe these methods, suggest academic disciplines that have knowledge of such methods, and strongly encourage faculty with knowledge of these methods to pool their expertise and serve as resources for their colleagues. Ideas for such collaborations are given.