No. The Privacy Rule applies to disclosure of protected health information by covered entities as required
by law. It does not apply to subsequent use or disclosure by the recipient. However, CPDR authorizing
legislation includes strict limits on use and disclosure of reported information. Those requirements
include obtaining a federally designated Institutional Review Board approval, and contractual agreements
to maintain confidentiality and privacy of the data and to not disclose confidential information beyond
the confines of the specific research project. See California Health & Safety Code sec. 103870.1. When a
researcher contacts a patient, they are required to inform the patient of how they obtained the patient’s
name, that the patient is under no obligation to participate in the study, that their participation or nonparticipation
will not be reported to anyone, and that they may request that no one contact them again.
Occasionally a patient will object to having their name released without prior consent, and CPDR has
methods to restrict those names from future contacts. But many patients are happy to participate in
special studies in order that we may learn more about diseases to better prevent and treat them. CPDR
was created to serve as a resource for research about Parkinson’s disease. The CDPH has a long history of
collecting confidential data and using it for research that saves lives.
