There's a Cost to Patients Withholding EHR Information

It’s being called the first real-world trial of the impact of patient-controlled access to electronic health records. And by many accounts, the results are not good.

The 6-month trial, conducted cooperatively by the Regenstrief Institute, Indiana University School of Medicine, and Eskenazi Health, found that nearly half (49%) of the 105 patients in the trial elected to withhold information contained in their medical record from some or all of their healthcare providers.

William Tierney, MD, president and CEO of Regenstrief, and principal investigator on the project, reacted to the results in similar fashion to many physicians: with concern.

“Healthcare is an information business,” Tierney said. “How can I deliver the safest and highest quality care if I can’t see everything that is in a patient’s record?”

Shared Concern

Tierney isn’t alone in his concerns. William Blazey, DO, a family medicine physician and professor at New York Institute of Technology’s College of Osteopathic Medicine who has been using EHRs since 2008, says that when patients hesitate to disclose sensitive information, physicians may not know all of the patient’s risk factors. That could impact the physician’s ability to provide preventive treatments. It might even cause some risk of additional harm.

“If a female patient is a smoker and seeks birth control but does not disclose her smoking behavior, she is at higher risk for adverse effects from birth control,” Blazey explains.

Gary Kirsh, MD, president of The Urology Group in Cincinnati, echoes those concerns.

“If patients withhold information, it impairs our ability to reliably diagnose and treat, and it may lead to the wrong treatment or to unnecessary over-testing and duplication of prior medical evaluation,” he says.

But Tierney doesn’t want to toss patients under the bus. He explains that approximately half of the providers participating in the study felt that if patients truly understand the risks and still want to limit access to some information, then they should be able to do that. For example, one of the patients in the study asked, “Why should my podiatrist have access to my mental health records? What good could that possibly do me?”

Still, adds Tierney, “The patient is telling the physician to practice medicine with one hand tied behind his back, and that makes for bad medicine.”

Education on Both Sides

Tierney says it’s important to educate patients not only about the role that information plays in healthcare, but also the potential risks they incur by hiding information from their providers. But he also believes the element of education needs to flow both ways.

“There really is a substantial amount of worry about what happens to a patient’s information, especially with all the publicity around leaks and things like that,” he explains. “I think providers need to understand that patients are sensitive about their information.”

Blazey says he understands that sensitivity. He explains that patients are curious about where their information is stored. They may have had a false sense of security in the past, thinking their records were on a piece of paper locked away in a doctor’s office, but in the aftermath of some high-profile credit card security breaches, they’re more nervous about EHRs.

“When the security features of an EHR are explained to patients and they understand their privacy rights, then they’re often more open and honest in how they inform me about risk factors,” Blazey says. “More and more, I’m seeing my patients being comfortable if I show them how it’s being documented and presented. A physician can complete documentation regarding a patient’s medical needs and still be sensitive to their privacy.”

Complicated and Costly Issue

Tierney says one of the reasons why the results of his study are so important is that Phase 3 of meaningful use is sitting on the horizon, and giving patients control of their records is being discussed as a requirement for that next phase. But is technology ready for that?

“How do you carve up the information in a way that it can be segmented, and can be put in a vault over here but open over there?” Tierney asks, rhetorically. “Technically speaking, we’re not there yet.”

There’s also a potential impact on overall healthcare costs as well as a practice’s bottom line if information is withheld. Blazey explains that insurance companies are starting to use pay-for-performance models. If physicians don’t have a patient’s complete information, then patient outcomes might be negatively affected, and the physician can be penalized for not achieving certain goals.

Tierney says it’s all about information management.

“I’m a general internist,” he says. “I don’t manage patients, I manage their information. And so, my ability to practice efficient, effective care depends on access to efficient, effective information.”