What is the role of the proposed Data Disclosure Board?
In brief, the Data Disclosure Board is proposed as a mechanism to ensure accountable oversight for those uses of identifiable information where full informed consent is not obtained. In some cases, such oversight already is in place using existing accountable committees. For instance, many research projects that use patient information already receive review by an Investigational Review Board (IRB) and do not require further review. But many non-research uses of such information, such as quality assurance and improvement projects, disease management programs, and public health tracking programs, may receive little or no accountable oversight today, despite the fact that they may involve collecting and using individually identifiable health information. Every such program or project should be reviewed at least periodically by an accountable committee, and documentation as to the committee’s rationales for allowing any uses of information without consent, or with limited consent, should
