Legislative Update, April 27, 2019

This session is unusual in terms of the progress (or lack thereof) of major bills. We should be having some long days on the floor by now, debating some of the larger issues on bills that already passed the Senate and are coming out from House committees.

It hasn’t happened, and nothing is even teed up for action in the week ahead.

That means either we will be having some really late nights in the final two weeks of the session, or some major bills are going to be held over for next year.

At the end of a two-year biennium, everything dies and must restart in a new session. Since we are in the first year, anything that doesn’t pass stays where it is and can continue on its path next year.

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In my Health Care Committee, we are grappling with a topic that I feel some passion about.

I’ve been here long enough to have seen two previous occasions where we threatened to break, or did break, a promise to Vermonters about the privacy of health data that the state was collecting.

Early in the opioid crisis, we created a statewide prescription database. You have no option about being included.

But we premised it on an absolute standard: we were creating this for health intervention, to help doctors identify those who might need drug misuse treatment or need to be blocked from further prescriptions.

It was not being created for law enforcement purposes, and we were explicit about that.

A mere four years later, the Senate waged battle to open the database up for police investigations. The House held firm (we would have approved if there was a warrant requirement), but it was a bitter fight.

In earlier years, a data base had been established to keep track of numbers and avoid duplication related to people with an HIV-positive status. The privacy commitment we made was that the data would be held between double-locked doors (figuratively.)

Then the federal government came along and said that AIDS funding would be conditioned upon access to the data with only one lock on the door. AIDS service groups supported the change because it preserved important funds.

Advocates, however, begged us not to break the promise made. We did it anyway.

Once you create a data monster, it is difficult to preserve the guarantees made as the basis for getting support for the data base. It’s too late to not create it.

So now we come to today’s question.

Your health care records are gathered – without your consent – into a state health information exchange (HIE). It’s an electronic data base for purposes of access to medical information among doctors, and it is an important system to ensure best-quality care.

Folks like the ACLU were pretty concerned when we created the Vermont HIE back in the early 2000s as part of a federal initiative to improve electronic transfer of health information.

So there was a very important agreement. The records would be gathered, but could not be accessed unless patients signed an informed consent.

The only exception was in emergencies with an unconscious patient. A “break the glass” system allows access to doctors without consent in those situations.

Your primary care doctor is supposed to give you information about the HIE, and ask you whether you agree to allow your providers (only the ones involved in your care) to be able to access those records.

This is called an “opt-in” system: you choose whether to opt to be in the system, as a benefit for your care.

The vast majority of Vermonters who have been asked have said “yes.” They see the benefit of not having to be asked to sign consent every time one doctor needs to get access to records from another.

But we have a big problem with our HIE. It is so underutilized that its value is impaired.

The state has poured millions of dollars into the system over the past dozen years, but doctors have little faith in it. There are problems with avoiding record duplication or record mis-matches between people with similar names, for example.

A big part of the problem has been dysfunction of the legal entity the legislature created to run the system. It’s a non-profit named VITL (Vermont Information Technology Leaders.)

Last year, we finally came to grips with that dysfunction, and gave VITL a year to clean up its act or be defunded. It would have been a difficult threat to enforce, because starting all over would have been mega-expensive.

VITL has begun to get into shape, but has come back, with the support of a legislatively-established work group, identifying a major obstacle to success.

The “opt-in” system, they report, is not working. Only xx% of Vermonters have been asked to consent. The system, as built, is too cumbersome for doctors to engage their patients in the consent process. And without most people on board, the system can’t work effectively.

VITL wants to shift to what most other states do, which is called, “opt-out.” This means your records (the ones we’re already collecting and storing) automatically become available to any of your providers, unless you take the initiative to say, “no, I do not consent.”

As currently planned, you won’t even be informed directly that you have the right to opt out. You’ll have to learn about it through public education efforts. (Maybe there will be a poster in your doctor’s office.)

It’s important to note that the vast majority of Vermonters – xx % -- consent to their providers having access, when asked.

But it is not only the rights of the minority who do not want to consent that are at stake here. It is your right to giving direct informed consent, even when the answer is “yes.”

The decision to create the system and gather patient records was created in statute, but the concept that there had to be informed consent for disclosures was an underlying assumption and not written into the law.

What that means is that if the legislature is silent on the issue this year, the decision to shift to an opt-out system (you won’t be told about it, but will have to say no if you don’t want to be a part) will be made by the independent Green Mountain Care Board, which has already signaled its intent to approve that shift.

The big, underlying philosophical question is who actually owns your medical information? Or the control of it? You might be surprised to know that hospitals and providers will assert that they own it (because they created the records.)

That would be consistent with federal law, but some states – New Hampshire, for example – have said that patients own their own information.

I believe it is critically important that the opt-in/opt-out decision be made by the legislature, accountable to Vermonters, not by an independent body.

It might well be that we have to agree to the change, but it would at least position us to set standards, such as a requirement that patients be directly informed about the existence of the HIE and their right to opt out.

We don’t have time left this session to fully sort through these issues, but I think we can survive another year without making any changes.

So I’ve drafted language that would delay any action by the Green Mountain Care Board by a year, and would establish a legislative study committee for this summer and fall to hold public hearings and dig more deeply into the question of whether, and how, the change might be made.

That committee would make recommendations to us in January so that we could make a more informed decision about how to proceed.

We’ll be discussing – and likely finalizing – a decision about proposing this approach to the Senate sometime in the coming week. If it is important to you, you might want to reach out to your Washington County Senators to urge their consideration.

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The only other major action in our committee has been our response to a Senate bill that would license ambulatory surgical centers that are not a part of a hospital.

We haven’t licensed them before because they haven’t really existed here, though they are common (and licensed) in most other states.

We’ve had only one for a number of years – an eye center in South Burlington – but now have a new one about to open in Colchester for general surgery.

The new center has been intensely controversial. In concept, it would be obvious that surgery that does not need a hospital setting to be done safely should be available outside of a hospital. It can be more accessible and less expensive, since it has less overhead.

However, Vermont’s small size creates a distinctly different health care system, and our current dysfunctional payment system complicates things immensely.

Hospitals are not paid based on the actual cost of providing a service. They are paid on a fee schedule based on what insurers are willing to pay and what will total up in the end to balance their budgets.

Those budgets are highly regulated and tightly controlled by the Green Mountain Care Board.

They also must accept payment from Medicaid and Medicare, regardless of how short that falls of actual cost.

As a result, there are two cost shifts. One is well known: private insurance (and thus, premium payers) are charged more in order to offset the state and federal underpayment.

The other occurs within the hospital operations: some services make money; others lose money. The hospital uses the revenue-producing services to fill in (and be able to provide) the revenue-losing services to their communities.

Surgery is a big revenue-producer.

Thus, these private, for-profit surgery center can charge less than a hospital for the same surgery that the nonprofit hospital offers. If it draws surgery away from hospitals, they lose the ability to shift revenues to pay for other services needed by the community.

That problem would worsen significantly if the surgery centers also turned down Medicare and Medicaid patients.

There was a big temptation in our committee to place major regulations on the surgery center model to prevent damage to financial stability for our hospitals.

We considered, for example, requiring them to go through the same intensive Green Mountain Care Board review of their budgets.

That would have been overkill, because their budgets are a drop in the bucket in comparison. It could have put them out of business, which would not be a fair outcome in terms of access to care for Vermonters.

They also have been willing to agree to accept Medicare and Medicaid.

We settled on a licensing bill that will require Department of Health safety oversight, and will also monitor data on how they perform and how they impact the overall health care system in Vermont.

I will be presenting the bill on the floor next week.

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It is truly an honor to represent you. My back legislative updates are available at representativeannedonahue.blogspot.com. Please contact me with your concerns and thoughts; I’m best reached via email at adonahue@leg.state.vt.us.