MONTPELIER — On the surface, the question is relatively simple: How should Vermonters decide whether their medical records are visible to practitioners in a statewide database?
But that question has spurred an ongoing debate that’s made its way to the Statehouse.
Advocates say the state needs to switch from the current system — in which residents have to “opt in” to the online health information exchange — to an opt-out setup in which their records will be included unless they object.
Opponents say that’s an unnecessary step at best, and at worst a move that could jeopardize patient rights.
Lawmakers are in the middle of that debate, but it’s not yet clear whether they or the Green Mountain Care Board should be taking the lead on the issue.
“We really need to understand whose responsibility this is,” said Sen. Ginny Lyons, D-Chittenden, the chairwoman of the Senate Health and Welfare Committee. “And as it sugars off, it begins to look more and more like it’s a rule, it’s a guideline — and it belongs with the Green Mountain Care Board.”
After hearing testimony spread over several days, “we’re hoping that we can finish up the decisionmaking on this within the next week or so,” Lyons said.
The health information exchange, a secure database operated by the Burlington-based nonprofit Vermont Information Technology Leaders, is supposed to improve health care delivery by making unified, easily accessible medical records available to all of a patient’s providers.
But VITL has struggled with administrative and financial troubles that have hampered the exchange. A 2017 evaluation found that relatively few patient records were available in the system, and most users had “lost confidence” in the exchange.
Since then, state officials have worked with VITL administrators to improve operations. The state has adopted a new health information exchange plan, and VITL has cut its budget while also increasing the number of records accessible in the system.
Currently, about 40% of Vermonters have records in the exchange. But VITL’s top administrator, Mike Smith, said progress is likely to “plateau” soon without changing the patient-consent policy from opt-in to opt-out.
“Six times out of ten, when a provider wants to view the records of a patient in the health information exchange, they can’t access it,” said Smith, a former top Cabinet official under then-Gov. Jim Douglas more than a decade ago.
A January report from the Department of Vermont Health Access agreed that the consent-policy change is necessary. The department found that 33 of the 40 states with statewide health information exchanges “have either opt-out consent policies or no consent requirement at all,” meaning Vermont’s policy “is outside the mainstream.”
“It has become clear to (the department) that at a basic level, the (exchange) will not be successful if providers do not find it useful,” the report said. “Whether the (exchange) is useful to providers depends first and foremost on whether they have access to the records of a high proportion of Vermonters.”
At that point, it appeared that the Green Mountain Care Board was going to address the consent-policy issue. But the chairs of the Senate Health and Welfare and House Health Care committees wrote a letter last month asking the care board to hold off while lawmakers considered the matter.
Since then, advocates on both sides have been arguing their case.
From VITL’s standpoint, the consent issue should be decided by the care board, Smith said. He noted that the Department of Vermont Health Access’ January report argued that no statutory change was necessary to switch to opt-out.
Smith said the opt-out policy would have no negative effects on providers or patients.
“We are not talking about changing any security protection,” he said.
The Vermont Medical Society also is lobbying for an opt-out policy, saying it would improve patient care and reduce physicians’ administrative burden.
“Due to the labor-intensive and manual process of gathering separate written consent under the opt-in policy, clinician offices vary in their ability to ask for and operationalize the consent process from patients,” Jessa Barnard, the society’s executive director, said in legislative testimony.
Dr. Julie Lin, a University of Vermont Medical Center dermatologist, told senators that the request for patients to opt into the health information exchange happens at registration “along with a lot of other paperwork. So it does sometimes get lost in the shuffle.”
Lin said many patients assume providers have instant access to their records from other institutions, though that’s not currently the case. Switching to an opt-out consent policy “would really improve patient care,” she said.
Others don’t see it that way. The Office of the Health Care Advocate said changing the consent policy is “the wrong solution” for Vermont, in part because of the spotty track record of exchange administration.
“If providers and (the exchange) cannot effectively manage patient ‘opt-ins,’ there is no reliable evidence to suggest that they could handle patient ‘opt-outs,’ ” the advocate’s office wrote in legislative testimony.
The advocate also argued that “Vermonters have a basic right to control how their private health information is shared.”
That’s a key point for Steve Whitaker, a Montpelier resident and activist in telecommunications and technology issues. Whitaker said Vermont must take this opportunity to redesign its health information exchange under the principle that patients — not health care providers — should own their medical records.
Whitaker said granting VITL automatic access to many more health records would be a betrayal of the public trust.
“The idea that we’re going to dump all of your records in a bucket, and let anybody who has access to the health information exchange rummage through that bucket, is absolutely absurd and untenable,” Whitaker told the Senate Health and Welfare Committee. “And yet, that’s the model we’re currently on.”
The committee also heard objections from Julie Wasserman, who formerly worked for the state in health care policy positions and also is trained as a registered nurse.
At stake, Wasserman said, is a “fundamental issue of personal privacy.”
“This information should belong to you, and you should have control over it,” she said. “This is especially true for people who have stigmatizing conditions.”