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.
***
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.
***
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.
***
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.