Last Thanksgiving, the University of Washington’s Husky Marching Band was traveling to the Apple Cup in Pullman when one of the band’s six charter buses slid off the highway and rolled onto its side.
As families of those on board struggled to get information, their worries were made worse when many were told information couldn’t be released because of the federal health information privacy law HIPAA.
Their problem was familiar to Stuart Hunt, a Camano Island resident who has spent the last 15 years working to change the law after being denied information when his elderly mother was hospitalized in Longview.
“It’s part of the unintended consequences of HIPAA,” he said. “It impacts millions of people.”
The federal Health Insurance Portability and Accountability Act (HIPAA) sets national standards to protect individual health information. Washington state also has its own health privacy law.
Hospitals, clinics and other agencies often interpret HIPAA too conservatively and deny family members information about patients, Hunt, 71, said. Hospital officials say the law is complex and its overall goal is to protect patients.
Following the UW Marching Band bus crash last year, Hunt began working with band director Brian McDavid to push for change. Hunt said he wants to create a HIPAA emergency protocol form that would be filled out by patients and gives hospitals and other facilities authority to release certain information to listed contacts. The form would remove liability while allowing families and friends to more easily receive information, he said.
Hunt said he’s contacted U.S. Sens. Patty Murray and Maria Cantwell about his proposal but hasn’t gotten very far.
“I feel like we’re being shucked off,” he said. “It doesn’t feel like it’s going to move the ball down the field.”
Hunt’s efforts to implement the emergency protocol stem from his own experience in 2003. His 91-year-old mother, Grace Hunt, was admitted to St. John Medical Center after a fall. Despite multiple previous visits, hospital staff, citing HIPAA, wouldn’t tell him anything about her condition.
He drove from Camano Island to Longview the next day after hearing second-hand his mother was going into the operating room. Hunt arrived after she came out of surgery for a broken ankle. She died seven weeks later, but Hunt continues to seek answers about HIPAA.
Hunt pushed for months to change the law on the state and federal level to make it easier for families to get information about loved ones. In December 2004, the Washington State Hospital Association announced it would ask all state hospitals to disclose to families or close friends the location and condition of patients unable to tell hospitals their preference.
But Hunt told The Daily News Wednesday that little has changed in the last 15 years, as was made clear by the problems that followed the bus crash last fall.
“It would only take one senator, one experience like we have had, and they would question and act as we are,” he said. “I honestly do not understand why it takes a tragedy to make a change.”
When Hunt’s efforts began, HIPAA was still new. The legislation was first passed in 1996, but went into effect in 2003. Although the rule is more familiar to those in and outside of the healthcare industry, Hunt said it is often wrongly applied.
Longview resident Claudia Shepard told The Daily News a veterinarian’s office even told her she couldn’t see the vaccination records for her new cat because of HIPAA.
HIPAA covers health insurance plans, healthcare clearinghouses and health care providers including: hospitals, clinics, nursing homes, pharmacies, dentists, behavioral health professionals, emergency medical technicians (EMT) and social workers.
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According to the Department of Health and Human Services, police and fire departments (except for EMTs and ambulances), non-health insurance plans, employers and educational institutions that aren’t also a hospital or clinic are not covered. This doesn’t mean these entities aren’t subject to other privacy laws or their own privacy policies, however, they are not required to follow HIPAA guidelines.
HIPAA allows hospitals to disclose basic “directory’ information, such as a patient’s location and general condition, to visitors and callers, according to the US. Department of Health and Human Services (DHHS). The patient can ask the hospital to restrict information, who the facility releases information to, or can opt out of being included in the directory.
Beyond the directory information, HIPAA also allows health care providers to give information to a patient’s family or friends in an emergency or if the patient is incapacitated, as long as they determine it’s in the patient’s best interest, according to DHHS.
However, many hospitals and other health care providers decline to share any information, even if it’s allowed under HIPAA, Hunt said.
“What WSHA and all hospitals are all hiding behind is the fear that if they make a mistake they will be fined up to $250,000, so the instruction is not to say anything,” he said.
Zosia Stanley, associate general counsel for the Washington State Hospital Association, said hospitals should provide directory information unless there is a reason not to. Hospitals not disclosing information when they legally could are likely instances of a problem with HIPAA education, she said.
“HIPAA has a lot of nuances,” she said, “It takes education and experience to be comfortable with the permissive sharing of information.”
Federal law mandates HIPAA training for all hospital staff, Stanley said. However, there may be a need to provide ongoing education about the details of HIPAA, she said.
“I think providers and facilities want to be thoughtful, which I think can mean they are more protective than the law would permit,” she said.
HIPAA can also cause issues outside of an emergency, said Longview doctor Rich Kirkpatrick, owner of Kirkpatrick Family Care. Many elderly patients or patients with dementia tell him not to share their information when it may be in their best interest, he said.
“Sometimes they just don’t want you to tell anybody,” he said. “So we’re prohibited from telling people, which prevents family members from adjusting and being more understanding.”
Kirkpatrick said problems can also arise when the clinic can’t reach a patient with urgent information.
The threat of being accused of violating HIPAA, even if a health care provider is innocent, can prevent them from legally sharing information, he said.
“I think people feel intimidated by the size of the penalties,” Kirkpatrick said. “I feel like you have to abandon common sense because the penalties are so awful.”
Hunt said he’s not asking to overturn or change HIPAA, and proposed the emergency protocol form with the intent to protect privacy.
“We’re offering a solution for those who have responsibility for people under their charge,” he said. “I believe that Washington can solve this. We’re not going to quit.”