Speech by Beth Givens, PRC Directo
Conference: Toward an Electronic Patient Record
Sheraton Harbor Hotel, San Diego, CA

The title of this talk is "Medical Records Privacy: Fears and Expectations of Patients". So you can get an understanding of my point of view, I want to start out by talking about our project, the Privacy Rights Clearinghouse, and then make several points about the topic.

Jenny had breast cancer and was seeking treatment from her HMO. She was contacted by the Northern California Cancer Center to participate in the Young Women's Breast Cancer Survey. Her health provider had disclosed her condition to this group without her consent. Although this disclosure wasn't against the law, Jenny was very upset and felt violated by it.

Jenny's name has been changed to protect her privacy.

Robert visited a chiropractor for a treatment. He decided not to return for more treatments, but the office's receptionist read his medical file and contacted him on her own. She was also an independent salesperson for Super Blue Green Algae and contacted him to get him to purchase the product from her. We told him about California's medical records confidentiality law and suggested he notify the chiropractor about his receptionist's privacy violation.

Robert's name has been changed to protect his privacy.

Peggy, an elderly woman who lives in a seniors complex, received several calls from a research company. They had been calling her unlisted number every evening demanding that she comply, even though she told them she didn't want to participate in the survey. Tired of the harassment, she contacted her state senator's office to complain who then contacted us. We both called the survey firm's office and complained on Peggy's behalf. Their assistant director was unaware of any harassing behavior, but vowed to investigate it.

Maddie joined the Audubon Society and also gave gift contributions to four friends. She specifically told the Audubon Society not to give her name to any other organizations, but they didn't follow her request. She and her friends all started to receive unwanted solicitations from other organizations. She complained to Audubon and got her money back.

Maddie's name has been changed to protect her privacy.

Maria requested a copy of her file from the California Student Aid Commission. When it arrived, she was shocked to find that in addition to her file, the names, addresses, Social Security numbers and phone numbers of 20 other people were in the same envelope as her record. She wondered what might have happened if that information (especially the Social Security numbers) had gotten into the hands of a dishonest person.

Maria's name has been changed to protect her privacy.

Speech by Beth Givens, Director, Privacy Rights Clearinghouse
First Amendment Coalition Conference
Panel: "Ain't Nobody's Business But My Own: Privacy Versus the Right to Know"

My job this morning is to talk about the privacy side of the balancing act that exists between access and privacy. I find myself in considerable conflict over the privacy/access issue. My first career is librarian, and as you probably know, librarians are proponents and pioneers of access.

Kate went to a city office to take a civil service test. Two days later, two police officers came to her house and arrested her for stealing a car. They told her that a car had been stolen at about the time she was at the city office. She had been identified as being in the area at the time. She insisted that she did not steal the car, but was told to appear in a lineup nonetheless. Unfortunately, she was identified by a witness and was taken to the women's jail. After spending the night in jail, she was released after contacting an attorney and the case against her was dropped.

Brad is a sales agent and makes sales calls from his home. His company uses their employees' Social Security numbers as their company ID numbers. It's on their business cards. When the employees take a new order, their Social Security number appears on their customer's paperwork.

Brad's name has been changed to protect his privacy.

By Beth Givens, Project Director
Privacy Rights Clearinghouse

It never fails.