When asked if she's against health information technology, Deborah Peel laughs. As a psychiatrist, Freudian analyst, and one of the nation's most outspoken advocates on behalf of patient privacy, Peel says it was never about the technology.
"Technology is absolutely not the problem," she points out. Growing up, Peel observed that problems with an infinite number of variables could often be solved by computers, a lesson from her father, who was an internationally recognized computer scientist and finalist for a Nobel Prize.
"The problem is our laws and policies and the fact that health information is the most valuable information about you in the digital age." And because health privacy laws and policies remain grossly lacking, IT has subsequently not been designed with privacy at the core.
Peel's patient privacy advocacy saw its beginnings back in the late 1970s when she accepted the position of psychiatry chief at Brackenridge Hospital in Texas, a role which she held throughout the '80s.
During her tenure, she saw some 10 percent of all hospital admission patients have some type of mental illness, so she spent the majority of the next decade working to increase mental health services for these patients.
Meanwhile, during this time, Peel also watched federal healthcare funding for mental health, substance abuse and psychiatry plummet from 8 to 10 percent of healthcare dollars to a paltry 1 to 2 percent.
Combine this with her work as a Freudian psychoanalyst, where she witnessed some of the most demoralized and discriminated against people, those with mental illness or those struggling with substance abuse, lose trust in a system meant to foster trust and improve wellbeing.
As a practicing psychiatrist, Peel saw health plans both jack up rates and decrease rates for her patients. She'd see many apply for life insurance and be denied, all based on their mental health and substance abuse history.
"People actively managing their diseases would be penalized," she says.
"I'm a psychiatrist and a Freudian psychoanalyst. You think anybody's going to talk to me if they think it's going to be on the Internet? They're not, and they don't."
Another element dissuading these patients from getting treatment is the fact that they have no say over how their protected health information is shared and distributed, Peel points out. Patient consent was effectively eliminated from HIPAA in 2002, meaning that the covered entity no longer needed to obtain the patient's written consent to release protected health information for treatment, payment and operations.
And the healthcare industry, she adds, has failed to recognize how significant these far-reaching ramifications can be.
A 2014 Harvard School of Public Health study assessing the privacy perceptions of U.S. adults pertaining to their health data found more than 12 percent of some 1,500 respondents withheld data from care providers over privacy and security concerns. When applied on a national scale, that represents nearly 38 million people in the U.S. who withhold medical data from providers. What's more, this number doesn't even consider people who altogether forgo medical treatment due to privacy and security concerns.
"What do you suppose the error rate is when 37.5 million people lie and omit?" says Peel. "We don't even know. They're not even studying that."
Then, there's also the 5 to 6 million people a year who delay or avoid treatment for dangerous conditions, Peel points out – for things like cancer, depression and sexually transmitted infections.
"These two things combined mean that 40 to 50 million people in the U.S. every year are acting because they know that the systems can't be trusted, that they're not private," she says. "Those are not trivial numbers."
The healthcare industry is in dire need of a paradigm shift that considers the dangerous implications of these people who continue to mistrust the system.
"You cannot replace this key, this critical two-person relationship, the patient and the doctor, with a bunch of technology and surveillance." And, on behalf of the patient, that's exactly what Peel continues to fight for.