Ms. Rein:
I think our view is essentially that it’s inevitable
that we’ll move forward with an electronic
transition and that it will be vital to health care
delivery and improvement. But we have a lot of
concerns about how this is actually implemented,
wanting to make sure that the policies are
integrated along with the technology.
Mr. Sesno:
What’s your main concern? We mentioned privacy. Is
that the main one?
Ms. Rein:
It’s privacy, confidentiality, appropriate data use.
I mean, we acknowledge that the information is going
to have to be shared, but we want there to be
certain rules and protocols for how it can be used
and shared and only when the patient or their family
wants that to happen.
Mr.Sesno:
So
to boil it down, it’s sort of like an ATM on
steroids, right? I mean, if I worry about my ATM
card or identity getting stolen, my medical records
would be potentially even worse and certainly a lot
more private.
Ms. Rein:
It is. And consumers have a much higher degree of
sensitivity with respect to their medical
information than financial information, in part
because we don’t have a lot of the safeguards in our
system protecting health information.
Mr. Sesno:
But why isn’t it mostly, like 95%, a great thing?
Ms. Rein:
Because if you talk about protecting me, the most
basic protection is that when I go to the doctor, he
doesn’t screw up my medical records and give me the
wrong medication. He can pull everything up, or she
can pull everything up and see what I’m all about.
I
think that that is certainly a laudable goal, and I
as a patient would want to see that, but there are a
lot of concerns about what else that information
could be used for. So right now, we allow
discrimination for employment, for health insurance
coverage. People are really concerned that their
health information could be turned and used against
them, and there have been several cases of that.
Mr. Sesno:
Dr. Merten, George Mason University is involved in
promoting this. What are you learning?
Dr. Merten:
Well, I think we’re learning that it’s important and
that there are concerns at the same time. I’m a
computer scientist, and over the decades, I’ve been
struck by how computers have changed so much of what
we do and how we act in our society. And it’s
amazing that in this one area--probably the most
important area where we’re lagging, where we haven’t
figured out a way how to address the issues that
have been addressed here with respect to privacy and
others. But it’s important. Information is power.
Information is important.
And what we’re trying to do at George Mason
University is bring the right people together to
address the kind of issues that we’re talking about
here.
Mr. Sesno:
Dr. Bentz, for the patient, what matters most?
Dr. Bentz:
Quality care.
Mr. Sesno:
And I think the fact that you are--you’re not a
horse-and-buggy operation anymore. You’re not a
ballpoint-pen operation anymore--that you’re using
the state-of-the-art in all of the aspects of health
care that gives them confidence when they walk out
of the office. But we saw you in your office there,
and you told us that in a sense, you, and a lot of
doctors like you, can’t afford this.
Dr. Bentz:
That’s a--cost is a big issue, and I think--and I’m
not alone. I think there are many people--I
reiterate, in my age group--who have been in
medicine for a number of years, and they have a
decision to make. They have to either--you can
either--as my father would say, "You can stand there
and shuffle your feet and wring your hands, or you
can do something about it." I did. I transitioned my patients into a practice that has electronic health
records and moved on to an institution that had all
of the things I needed to continue to do health
care, like palm pilots and all the computer support
I could possibly need.
Mr. Sensno:
So, Dr. Clancy, let me ask you this question. Again,
I’m thinking as a patient here. I’m also thinking as
a consumer. I use technology all the time, and I’m
fond of saying, every once in a while when something
crashes, that I’m standing at the digital divide and
I’m about to jump. Because you know, something
crashes or shuts down, and it shuts me down. How
does that not get--how do you balance the
opportunities and the risks of this kind of
technology?
Dr. Clancy:
Well, Ii think that’s a really, really important
question. And of course, you saw Dr. Benjamin in the
opening clip. She’s the same doctor she was
before--after--before she was--after Katrina as she
was before Katrina--same smart person, same
compassion and passion about giving her patients
good care. But she doesn’t have their information.
So to some extent, that is the critical issue. What
kind of care and quality can I provide to the
patients who come to me with their problems if I
don’t have their information? And the short answer
is, "not very good."
So
many doctors do worry about the backup problem. What
happens if the server goes down or I lose power? And
so forth. But more and more vendors are getting
smart about providing backups for that. So you know,
when the veterans hospital left New Orleans, they
evacuated their people, and they simply uploaded all
the records.
Mr. Senso:
Well, they had all this information living on
systems.
Dr. Clancy:
Absolutely.
Mr. Senso:
Alison Rein, give us an example of--if there is one
at the top of your head--of a concern, of a case
where someone’s medical records weren’t properly
guarded.
Ms. Rein:
The mechanism to track that right now rests with the
Office of Civil Rights, which is part of Health &
Human Services. And there’s been, I think, 24,000
reports, and not one single violation or penalty has
been assessed, so--
Mr. Sesno:
So reports of what, of what happening?
Ms. Rein:
It could be anything. So one really, really touching
example is a woman whose--whose mental health
information was sent along with the entirety of her
medical record, and that piece of it didn’t need to
go to get the care that she needed. And now she is
completely unable to get that piece removed from her
medical record. So every time that medical record
gets shared with another institution, they also have
her mental health history. And that’s really--
Mr. Senso:
And she doesn’t want that?
Ms. Rein:
She doesn’t want it. She has tried-- there was an
article in "The Wall Street Journal" a couple months
ago about her, and she has tried every means of
recourse she has. And she can’t get anybody to
change it in the system, in part, because the law
affords her no protection and no recourse.