BYU, U. researchers say medical health privacy forms can lead to more lies, misdiagnoses

SALT LAKE CITY — Soon after walking into a doctor’s office, a patient is handed a form or a tablet asking for a lot of health information — but many patients don’t notice how important that form could be for their care and diagnosis.

It’s not uncommon for people to fudge the truth on these forms to make themselves look a little bit more healthy, but a recent study done by researchers at Brigham Young University and the University of Utah shows when patients are given a Health Insurance Portability and Accountability Act form mandated by the 1996 privacy law before filling out the health survey, telling them the information will be protected — they lie even more.

Mark Keith, a BYU professor of information systems who participated in the research, explained there are two modes for processing information, a primary and a secondary route. In the secondary route, people are thinking on cruise control and are likely to answer honestly, but once they switch to the primary route they are actively engaged and they are not likely to move back to the secondary route.

He said the HIPAA forms given right before a health survey help people remember there is a risk to sharing health information and push them away from the secondary route.

The study was published in PLOS ONE earlier this month. It analyzed 611 potential patients split into six different groups, which received different wording on the privacy forms.

Mouse tracking was used to evaluate whether a person might be lying. Keith said they paid attention to the hesitation, mouse speed, time spent on the question and the number of times the mouse was moved back and forth.

“We discovered that women were more likely to lie initially but would then ‘come clean’ if questioned further,” Keith said. “However, men were more likely to lie once you asked them if they were lying. In other words, if men lied at the beginning they would lie again later.”

Additionally, women were more likely to lie when the HIPAA notice was framed as a benefit to giving truthful information, and men were more likely to lie when the privacy notice included a statement saying untruthful information could hurt the diagnosis.

Ripple effects from a lie on a doctor’s form

A BYU press release about the study said 60% to 90% of people lie to their health care providers, and because of this, roughly 1.5 million people have incorrect medications that add $3.5 billion in unnecessary annual health care costs.

Dr. Rachel Hess, a general internist physician with University of Utah Health, said doctors know people often don’t tell the full truth on medical forms. People will minimize and maximize things to make themselves look better — but sometimes these white lies lead doctors to go down a completely different path that could negatively impact their health.

Doctors attempt to address this through how the questions are phrased and with follow-up questions when talking to patients.

Hess said often teenagers will lie about sexual history, meaning doctors don’t check for sexually transmitted diseases, or they lie about alcohol use and drugs. Adults will underestimate the amount they are smoking, drinking or eating unhealthy foods. People neglect to mention a close relative’s health conditions or visits they have had with alternative medicine or naturopathic practitioners.

All of this information can all help a doctor choose what they want to investigate as the cause of a health concern and what medications to prescribe. When a doctor doesn’t have the information it can put a patient’s health at risk, Hess said.

Prior to this study, Hess said she assumed a privacy notice would help people be more honest with what they disclose.

After this study, Hess said conversations around when they can distribute privacy forms in relation to the time of the appointment at U. Health could be important. At U. Health, she said patients receive HIPAA forms at least once a year, but not at every appointment.

Hess said the lies could be a reflection of how a doctor reacts to negative information and works with a patient to improve their health. She encouraged people to find a doctor whose style works for them, someone they feel they can be honest with and can take advice from without feeling bad.

“This is a partner for you in your health journey and somebody that you’re supposed to be able to trust and hear advice from and … feel comfortable working with,” Hess said.

She said it isn’t that other doctors won’t suggest appropriate care, but when there is a relationship and trust between a doctor and a patient then the patient can feel more comfortable participating in that care.

A collaboration

Keith said this study began as part of the BYU Healthcare Industry Research Collaborative, which encourages faculty from various disciplines to help tackle health care problems. Jeffrey Jenkins, another representative from BYU’s information systems department, was also involved in the research.

Tamara Masters, a University of Utah professor in the marketing department, was also one of the researchers who helped with the study by bringing in a separate area of expertise. She helped with the analysis and did much of the writing.

At BYU, Keith has studied the psychology behind consumer information disclosure decisions, such as what leads people to give up information, and he began a discussion about how that knowledge could be applied to health care.

The software they used to track mouse movements is most often used in loan applications to help loan officers evaluate truthfulness. Keith said it was designed by one of his colleagues.

Keith has tried all sorts of ways to tell people their data would be kept safe in all situations, and each time it makes them stop and think. He said he hasn’t found a way to get privacy information to people without it raising an alarm and causing them to be more likely to keep information to themselves. He said it’s easier to understand the risks than the benefits.

“It always has the opposite effect of making them withhold more information and either lie or just not disclose information, and health care’s the worst possible area for that to happen,” Keith said.

In most areas Keith studies, it’s not in the best interest of the consumer to share the information, but health care is a unique space where disclosing information helps not just the doctor but the patient as well.

The study suggested privacy notices should be sent “well before” medical offices request personal health information, or requirements to disclose HIPAA information should be reconsidered altogether.