[A] proposed policy shift for Vermont’s health information exchange has spurred concerns about consumer confusion and patient privacy.
Currently, Vermonters have to agree to allow their health information to be viewed on the exchange, which is a system used to share records among medical providers.
State officials want to change that “opt-in” policy to an “opt-out,” which means a patient’s agreement to participate in the exchange is automatic unless the patient objects. Proponents say it’s a way to boost the exchange’s usefulness, and it aligns with the way other states handle the issue.
“I cannot look at the (exchange) experience of the majority of states and believe that opt-in remains the most effective way to operate the program and to maximize our chances for success and protect the public investment that went into it,” said Michael Costa, deputy commissioner of the Department of Vermont Health Access, at a meeting of the Green Mountain Care Board on Wednesday.
But there is opposition, with some saying patients may not get enough information to make an informed decision about their health records.
“I would urge the Green Mountain Care Board to not agree to a change in policy without first reviewing a compelling plan to ensure that consumers understand their options,” said Kirsten Murphy, executive director of the Vermont Developmental Disabilities Council.
The consent issue is arising because Vermont’s health information exchange has not been working the way it’s supposed to.
The exchange – a secure database of patient information including lab results, discharge summaries and medication histories – is supposed to make health care safer and more efficient by giving providers a unified, easily accessible record for each patient.
But the exchange’s operator, Burlington-based Vermont Information Technology Leaders, has struggled with administrative and financial issues. A 2017 analysis by a state consultant found that the exchange contained relatively few patient records, and many users had “lost confidence” in the system.
Since then, state officials and VITL administrators have been trying to address those problems. For example, VITL has cut its budget while increasing the number of patient records in the exchange, and the state has adopted a new health information exchange plan.
The impetus for much of that work was Act 187, passed last year by the Legislature. That law also required the Department of Vermont Health Access to examine whether “individual consent to the exchange of health care information through the Vermont health information exchange should be on an opt-in or opt-out basis.”
On Wednesday, the department presented its preliminary findings: Ditching the state’s opt-in provision would bolster the exchange and would not pose any risk to patients, officials said.
In examining other states, “we quickly found that the vast majority of states that have statewide (health information) exchanges either have opt-out consent or no consent requirement at all,” said Steve Odefey, the health access department’s general counsel.
Those states with no consent policy default to federal medical-privacy law, Odefey said.
In all, 33 of the 41 states with exchanges use opt-out consent policies or have no policy. Four others use a mix of opt-in and opt-out, Odefey said, while just four states – including Vermont – require patients to opt into the exchange.
Officials say switching Vermont’s policy could make a big difference in terms of the number of patient records in the exchange, a point backed up by the consultant that performed the 2017 VITL assessment. That report said opt-out states “typically have 2 to 4 percent of their population opting out, or 96-98 percent opted in”; in contrast, only 19 percent of Vermonters had records shared by the exchange at the time.
State officials also said they found no negative security or privacy implications for making the transition to an opt-out policy. “Changing the model of consent would have absolutely no impact whatsoever on the security features that protect information” in the exchange, Odefey said.
Officials said the state would take care to ensure that any new policy makes it easy to opt out of the exchange. And they said the policy change itself could be done via the care board, with no legislative action required.
“Our analysis determined that there’s no Vermont statute that governs whether or what kind of consent would be required from the patient for their records to be exchangeable,” Odefey said.
The department says it consulted with a variety of groups in reaching its conclusion, and a majority supported the switch.
But two – the Office of the Health Care Advocate and the American Civil Liberties Union of Vermont – were opposed.
Eric Schultheis, a staff attorney with the advocate’s office, told the care board that the state needs to get a better handle on whether Vermonters really support the change. He also questioned whether an opt-out system will operate smoothly, given the problems with the current opt-in system.
If medical providers aren’t currently asking patients whether they want to join the exchange, “the solution should be addressing that causal problem and not putting the burden on consumers,” Schultheis said.
Several other commenters at Wednesday’s meeting expressed concern about the proposed change. Murphy said the Developmental Disabilities Council “is concerned that a shift to an opt-out consent policy would degrade patient privacy.”
“For the population we represent, which generally has a low level of health literacy, shifting the burden from provider to consumer would compromise the ability of people with developmental disabilities to make an informed decision about their personal health information,” she said.
But representatives of the Vermont Medical Society and VITL said they support the move.
Mike Smith, who took over as VITL’s top administrator last year, acknowledged that the organization has boosted the portion of Vermonters who have records in the exchange to nearly 39 percent. But Smith said that progress will “plateau” without a change in the way Vermonters agree or don’t agree to participate in the exchange.
“Currently, medical providers can only access a minority of Vermonters’ records,” Smith said. “Changing the policy would mean that they’d be able to access a majority of patient records in Vermont, with all the safeguards that are in place.”
Several care board members expressed general support for the policy change at Wednesday’s meeting. But the board took no action, and Department of Vermont Health Access officials said they would incorporate feedback from the meeting into their final report to the Legislature, which is due next week.