Brad Racino and Jill Castellano report on what sounds like either willful or negligent handling of highly sensitive information of research participants bu a non-profit participating in some university-funded research.  In either event, the university was notified of a breach in October and STILL hasn’t notified the research participants with HIV whose data was available to those who never should have had access to it. That is totally unacceptable.  If ever a breach incident response deserved to be on a wall of shame, this is it. But because this is research that was not federally funded, it did not implicate HIPAA and OCR has no role or authority here, as I understand it.   The following is from the inewsource report:

University of California, San Diego officials stonewalled attempts to notify women in an HIV research study that their confidential data was breached more than seven months ago, an inewsource investigation has found.

UCSD researchers conducting the EmPower Women study told university officials in October that participants’ names, audio-taped conversations and other sensitive materials were made accessible to everyone working at Christie’s Place, a San Diego nonprofit supporting women with HIV and AIDS. They called the situation “very serious” and said the women affected are “within one of the most vulnerable and marginalized populations.”

But internal emails, reports and meeting minutes chronicle months of communication between lead researcher Jamila Stockman — who pushed for telling two dozen women enrolled in the project about the breach — and UCSD officials concerned about the consequences.

UCSD partnered with Christie’s Place to recruit subjects into a study that would examine how their experiences with domestic violence, trauma, mental illness and substance abuse affected their commitment to HIV treatment. The women’s information was supposed to be kept confidential and accessible only by authorized research staff.

According to university records, the breach occurred when Christie’s Place managers intentionally stored all study information in a database it uses to track patients receiving clinical care, which can be accessed by anyone at the nonprofit, allegedly to “inflate” their patient numbers and bill San Diego County for more services. Christie’s Place denied that allegation.

In a statement, UCSD told inewsource it is working on contacting the research subjects, a process it said will begin in about one to three weeks. It blamed the delays primarily on one administrator who was put on leave.

Read more on KPBS.