HIPPAA and other recent legislative proposal and regulations have heightened the public's awareness of the multiple uses of their health information and stimulated an ongoing debate about privacy and confidentiality. There has only been minimal dialogue about whether agreed upon uses of health information are optimal. Supplemental legislation is proposed to ensure that whenever health information is used for research or administrative purposes (including quality assurance), a plan is in place to evaluate the opportunity and to feed patient-specific information back into the health system to benefit an individual or group of patients from whom the health information was derived. The mechanism to implement this provision is a "designated research peer review organization" or "drPRO". A case study, using beta-blocker clinical and quality improvement research illustrates both the needs for this proposal and the potential impact of its implementation.
Learning Objectives: The participant will be made aware of the limitations of current legislation regarding assurances that research benefits the participants and be introduced to a new model for making the difficult ethical decisions of when and how to notify participants.
Keywords: Health Information, Research Ethics
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
Disclosure not received
Relationship: Not Received.