State switched to an opt-out default on March 1
By Katie Jickling/VTDigger
On March 1, thousands of Vermonters’ medical records became available to doctors, even for patients who have not given consent for their records to be shared.
The new sharing policy went into place Sunday for records on the statewide health information exchange, a database run by Vermont Information Technology Leaders.
Previously, Vermonters had to give consent for doctors to access their lab tests or medical history on the exchange, which stores the health records of all patients in the state. This week, that changed. The records are automatically open to doctors unless patients “opt out,” or decide to keep their medical histories private.
The new policy roughly doubles the number of patient records accessible to doctors, from about 45% to about 92% of Vermonters, according to Andrea De La Bruere, director of client services for VITL.
Long term, shared records are meant to make care more efficient and effective, according to De La Bruere. When patients are admitted to the emergency room, for instance, medical providers are now able to view patients’ prescriptions and medical history. Specialists can see referrals from a primary care doctor; a nurse can quickly access a patient’s lab tests.
The system can be particularly beneficial for people with disabilities or with complex diagnoses who would otherwise have to rattle off their lengthy medical history at every appointment, said Susan Aranoff, senior planner and policy analyst for the Vermont Developmental Disabilities Council.
But Aranoff, and other advocates, say they worry about the number of people who remain unaware of the switch.
“Our health information contains the most important private, sensitive information about us,” Aranoff said. “We come into the doctor’s office with the expectation that our information isn’t shared without our permission.”
The new policy is meant to improve operations for the health information exchange — not to be confused with Vermont Health Connect, the state’s health insurance exchange. The publicly funded nonprofit has been plagued by years of financial and technical challenges. In 2016, VITL didn’t have enough money in the bank to pay its employees. A consultant’s report the following year found that Vermonters had “lost confidence” in the organization, in part because there were so few patients in the system. In 2018, VITL employees spent months trying to eliminate hundreds of thousands of “duplicate” records.
Since, former VITL CEO Mike Smith, who’s now the secretary of the Agency of Human Services, made financial cuts to move the nonprofit to stable financial footing.
“Over the last two years, VITL has met every milestone that they have been asked to meet by the Legislature, by the Green Mountain Care Board, and by [the state],” said Jenney Samuelson, deputy commissioner of the Department of Vermont Health Access. Last year, the Legislature voted to change the consent policy, over the objections of some advocates.
The change will also help address another problem — the lack of patient records available to doctors, Samuelson said. Medical professionals are hesitant to use the current system because there were so few patient records they could access.
Some people, especially those with stigmatized conditions such as HIV/AIDS or certain disabilities, don’t want their information to be shared for fear of discrimination or disparate treatment, said Mike Fisher, the state’s health care advocate. Certain people “don’t necessarily want people to know what other care they’ve received,” he said. “Some of them feel like it’s not applicable.”
Fisher said he was concerned about making sure people were able to give “meaningful consent,” and that they had enough information to understand the process and the implications of their choice.
“People need to be able to make that decision for themselves,” he said.
The Department of Vermont Health Access has launched an information campaign to educate the public about the consent change. They’ve posted on Front Porch Forum, posted cartoon social media to help simplify and explain health records and also put flyers
in doctors offices and worked with advocacy groups and agencies such as the Pride Center, the Vermont Developmental Disabilities Council, and local mental health agencies.
In spite of their efforts, many people have no idea that their information may be open to all providers. “Do Vermonters have a better understanding of VITL than they did a year ago? My gut answer is no,” said Aranoff.
De La Bruere agreed. “I don’t think enough people know about it,” she said. But staff at the state and at VITL would continue to get the word out. “The work is beginning and will be continuing long after March 1.”
VITL staff have also tried to assuage concerns about the confidentiality and security of the health data. Staff can track who views each patient’s data, and check for irregularities, according to De La Bruere. Patients can request an audit of their own health data, including the information that’s in their records and who has viewed it. And all medical staff who use the health information exchange have to be trained in its confidentiality requirements.
Patients also have the option to opt out from allowing their information to be shared by providers. Those forms are available online, as well as at doctors’ offices.
Vermonters can also opt out by calling the VITL hotline (1-888-980-1243) or by filling out a form on the website vthealthinfo.com.
Most people do want doctors to have access to their health records, according to De La Bruere. When asked, more than 95% of people grant permission for doctors to see their records, she said.
Most states have moved in that direction; 33 states have no consent policy or an opt-out default, according to a 2019 report from the Department of Vermont Health Access. Since Vermont’s change, only three other states have an “opt-in” default.
That’s because there is a net benefit to patients, according to Samuelson, of the Department of Vermont Health Access.
Her example was personal. When Samuelson went to see a specialist last year, the primary care doctor hadn’t provided a referral.
“I showed up and the doctor was like ‘why are you here?’” she said. Samuelson had to walk through her medical history, the situation, and her family’s medical history to convince them that she needed a visit.
“I left humiliated, I left frustrated,” she said. “I’m unlikely to go back and see that health care provider again, which could leave me higher at risk for certain types of conditions.”
If the specialist had access to her health records, that miscommunication could have been avoided. “In the end what it means is better care,” she said.
For more information visit vthealthinfo.com.
