Protecting Your Personal Health Data: US Senator Bill Cassidy on Bipartisan Smartwatch Data Act

Senator Bill Cassidy

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Margaret Flinter: Welcome to Conversations on Health Care with Mark Masselli and
Margaret Flinter, a show where we speak to the top thought leaders
in health innovation, health policy, care delivery, and the great minds
who are shaping the healthca re of the future.

This week Mark and Margaret, welcome U.S. Senator Bill Cassidy,
Louisiana's ranking republican and also a physician. He's co - sponsored
a bipartisan bill addressing growing concerns around patient data
protection. Citing tech companies li ke Google, now handling data for
large health systems as well as their purchase of Fitbit now gaining
access to huge amounts of personal health data. He talks about this
smartwatch data bill aimed at protecting consumers.

Lori Robertson also checks in, th e Managing Editor of FactCheck .org,
looks at misstatements spoken about health policy in the public
domain, separating the fake from the facts. We end with a bright idea.
It's improving health and wellbeing in everyday lives.

If you have comments, please e - mail us at [email protected] or find
us on Facebook, Twitter, or wherever you listen to podcast. You can also ask Alexa to play the program Conversations on Health Care.

Now, stay tuned for our interview with Lo uisiana Senator Bill Cassidy
here on Conversations on Health Care.

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Mark Masselli: Welcome to Conversations on Health Care. I'm Mark Masselli.

Margaret Flinter: I'm Margaret Flinter.

Mark Masselli: We're speaking today with the United States Senator Bill Cassidy, a
Republican and Senior Senator from Louisiana. Previously, he was the
U.S. Representative for Louisiana's sixth congressional district and
before that, a member of the Louisiana State Senate. Senator Cassidy
is also a gastroenterologist and founded the First Free Community
Clinic in Baton Rouge to treat those lacking insurance and access to
medical care. Senator Cassidy is a graduate of Louisiana State
University and LSU School of Medicine. Senator Cassidy, welcome to
Conversations on Health Care.

Bill Cassidy: Hey, thank you for having me. I'm very pleased to be with you.

Mark Masselli: Oh, that's great. I think it's fair to say that our country and its
population are still trying to find this common ground, if you will,
around health reform and health policy. There's plenty that divides us,
but I think you have been trying to unite us in a bipartisan effort. You
recently joined with Democratic Senator Jacky Rosen of Nevada
submitting a bill aimed at protecting personal health data. You cite

Senator Bill Cassidy

Google's recent partnership with health system ascension as well as
their acquisition of Fitbit. Examples that you're concerned about, I'm
wondering if you could talk a little bit about your Smartwatch Data
Act and what you're seeking to accomplish with it ?

Bill Cassidy: Imagine that you have a smartwatch that gives a sense of how much
you're walking every day, that's an app iCheck, but it also has the
ability to see if you fall or if your gait the way you walk is shuffling or
whether it's a good long strid e. You can monetize that data. If you find
that someone who happens to be, because you know this, 70 years
old, has begun to fall more often, or maybe they're not walking at all,
they are declaring themselves at risk for neurologic disease, maybe
Parkinson 's. If they have Parkinson's, you understand if you're a
Medicare Advantage Program, yeah, I get a little extra for somebody
who's 70 something years old, but maybe not enough for someone
who's going to go into full blown Parkinson's. Maybe that's somebody
I don't wish to have on my plan. That can be monetized. That is
wrong. We need to have safeguards around our data been monetized
in such a way unless we are aware of the implications of that data
being monetized.

Margaret Flinter: Senator, it does feel so metimes like we're in the wild, wild, west with
some of these issues, and it's really a lot of it is fairly recent. I'm not
sure we could have anticipated not too many years ago, the explosion
of platforms from the smartwatches gathering, real - time health
metrics and here's your great example of maybe monitoring the gate
of somebody who might be moving towards Parkinson's or in the
early phases. We've got genomic companies like 23andMe, leveraging
enormous amounts of data and also potentially profiting from that
data. HIPAA now seems like almost the distant past when it was first
created and we all had to master a new domain to learn about that.
We understood was fundamentally to try and protect patient privacy.
We don't know if it's fully equipped to help u s govern these new areas
of health data generation. If you could talk with us about how this bill
might enhance health data privacy, and does it build upon HIPAA, is
that still a strong foundation that we can build upon?

Bill Cassidy: I think HIPAA is a st rong foundation, but HIPAA has limitations. As one
example, these apps that would download your medical records, you
say, okay, please download my medical records. Those are not HIPAA
covered entities, and so that app can do whatever it wants to with
your data. Now, people argue it's my data, so you can do something
with it what you wish. I'm a physician and I know that in that history
and physical is a family history.

Margaret Flinter: Right.

Bill Cassidy: I have a family history of a sister who had a diff icult pregnancy. Oh,
let's figure out who that sister is. She has a different last name, but

Senator Bill Cassidy

we know who she is and we know who she works for, that small
group. Do we really want to ensure this particular small group,
because we see that she still is in ch ildbearing potential. In fact, we
know from consumer data that we purchased that she recently
purchased a pregnancy test. She's thinking of becoming pregnant
again, but she had a high risk pregnancy once before. You see where
I'm going with it.

Margaret Fl inter: Absolutely.

Bill Cassidy: Now, this example is not outlandish. It is certainly within the scope of
what people can do now with third party data. The fact that I am
downloading my history in physical, which includes a family history,
which can then b e monetized, sold without my permission, and
specifically without my sister's permission, is a brave new frontier.
Now, that's before we begin to talk about genetic data.

Margaret Flinter: Right.

Mark Masselli: Right.

Bill Cassidy: Genetic data, which has the code for everybody to whom I'm related.
My sister didn't get permission for that genetic data to be posted and
yet, they know pretty much -- they know a lot about her, because of
my decision to so post. We just have to think this through.

Mark Masselli : Well, and I really appreciate how you've described this in ways that I
think people can get their heads around. I also think, in addition to
those concerning trends, we also have the data breaches that are
happening all across the country and really all across the world.
You've got that on one side, you've got people tapping into your data
as you’ve actually described in using it for ways that aren't about
improving outcomes. Then, you have sort of the corporate group who
are entering the healthcare busin ess, the CVSs, the Walmart's,
Walgreens. On one hand, those are great for our consumers, but it
also is a point of vulnerability in terms of, as you've described earlier
about how this might be utilized. What do you think the right set of
protections are a t the state level, the federal government's
responsibility? Where do you see this responsibility for protection lie?

Bill Cassidy: Well, let me just kind of accentuate something that you mentioned,
but just to also show. I've been showing the risk of havin g our privacy
sacrificed, but you mentioned there's the potential for great benefits.
There's a friend of mine whose son has a rare form of inflammatory
bowel disease, which does not respond to the normal drugs like
Humira that are used to treat it. There is enough of a data set that
they've been able to realize that he is one of a very small number of
people that have this particular genetic profile, and although this drug
doesn't work, this one does.

Senator Bill Cassidy

Mark Masselli: Yes.

Bill Cassidy: We can also see that there is a promise in the ability to amalgamate.
What is the potential? What is the -- where do we need to be? One,
I'm not sure that answer is entirely there, but if something is going to
be monetized, I kind of would like to directly benefit. If I have t he
gene, somebody researches me and I live to be 110 years old, and I
don't have Alzheimer's and I don't have arthritis, I don't have
diabetes, and someone says, let's go through his genetic code and
find out the longevity gene. Maybe I should know they ar e using my
genetic code for such a gene, maybe I should benefit. By the way, as
an aside, the United States does not require permission for someone's
DNA to be tested. Meaning that someone could sneak up to that 110 -
year - old, clip off a little bit of their hair and send it off without their
permission and their genetic code could be so isolated. Whenever I
see a pop up ad, how do you know somebody is cheating on you? I
bet you they're trying to get somebody to send off, I've never clicked
on it. I suspect t hey're trying to get you to send off that long hair you
found on their coat, because they would like to expand their data set
of genetic code.

I think we just need to have a very full conversation about it and we
have to realize what is that stake, not ju st for the individual, but
everyone to whom he or she is related to and/or is given information
about, and then try and find the resolution of that tension. By the
way, I also think that you should only be able to get DNA testing on
somebody with their exp licit permission, unless that person is a
minor, in which case the parent could be the agent for them. That is
something I feel strongly about.

Margaret Flinter: Senator, I think it's fair to say that you've been a vocal opponent of
the Affordable Care Act , but you have been offering and advocating
for other approaches that you think would help reform the health
care system, and you've promoted a number of bills, which really get
right to the heart of the issue that's on everybody's mind, which is the
cost of health care in America. Your bills are seeking to promote
transparency and health delivery costs, and particularly in drug costs,
it is astonishing to look at the price of some of the drugs that we need
to treat conditions today. Talk about some of the noteworthy aspects
of your legislative proposals, and also if you could maybe share with
us some of the highlights of the white paper that you produced on
reducing healthcare costs. I think that was just released last year.

Bill Cassidy: Yeah. You go on ou r website, cassidy.senate.gov , and we have a little
bar you can click making healthcare affordable again. Let me just say that all the bills we've proposed have been bipartisan. I'm not saying it's solely a re publican concern. I think it's just a recognition that
healthcare has become unaffordable. I'll say the administration is also

Senator Bill Cassidy

bought into this. The president is all about price transparency as a
market mechanism to get to lower prices. Would it be great i f
somebody ordered a CT scan on your daughter and you could scan
her barcode for the certain type of scan they wanted your daughter to
have. They told you that you could go right now down the hallway,
and get that CT scan for $2,500. You could go Thursday at midnight
and get it for $250 across town. You look down at your daughter and
you would say, you always wanted to stay up until midnight, you're
going to get to, and you would take her Thursday at midnight. That
would be a market force responding to the fact that you are having an
elective procedure.

By the way, it is not necessarily the insurance company that will
negotiate that best price for you, because the insurance company will
pay for both. You can't really rely upon them to do anything more
than to pay 80% of the cost. I picked those two numbers, because
about five years ago, there was a survey done in Los Angeles for the
cash price of a CT scan, and that was the difference in the cash price
then, wouldn't it be great if the consumer knew, and wou ldn't it be
even better if she had bought searching for that better value. We
think that once you begin to mandate price transparency, the market
will respond.

Now, I say that because more and more folks are moving to Health
Savings Accounts, in which the y're responsible for the first part of
their deductible, so this makes that Health Savings Account more
useful and hopefully more used, because you now have the ability to
find that good price. That's one of the ideas that we've been pushing
for, but one t hing we are big about is direct primary care, in which the
patient contracts with a primary care physician $50 to $100 a month,
and they get everything cared for on an outpatient basis within that
scope of practice. I call it a Blue Collar Concierge Practi ce. If you have
a headache Friday afternoon, the doc doesn't send you to the ER to
wait overnight to finally get your headache treated. If he does that,
you're going to cancel your contract with him. It's a month to month
contract. He's going to have some sort of follow up, so you're going to
be seen, it's not going to cost you anything out of pocket, you're going
to be seen and you're going to have your problem addressed, then
maybe even making a house call, because that would be more
convenient for you, a nd you're more likely to keep that contract going
with him. That’s another example of what's already being done, but
which can lower costs for folks and make healthcare more convenient
for them.

Mark Masselli: We're speaking today with U.S. Senator Bill Ca ssidy, the Senior
Senator from Louisiana. He previously was their representative from
Louisiana, sixth congressional district. Senator as a physician, and also
is someone who worked in a free clinic caring for the most

Senator Bill Cassidy

economically challenged patients and also your region has a very high
rate of uninsured residents. I'm wondering how that informed your
thoughts of how we might improve access to primary care? You talked
a little bit about the HSA. I know you've got a new bill coming out,
you’ve ways that tha t might be allowed people to use that for primary
care as you were indicating. I also know you've been a supporter of
Community Health Centers in Louisiana, but what's your larger
thinking about this access? You've got the working man's or working
woman's package that you have. I say working class and below
economically, are you contemplating?

Bill Cassidy: Think about the way many health insurance plans are structured.
They can have a $6,000 deductible. 95% of families will never get to
$6,000 in health ex penses per year. Now, that plan may work for
somebody who is better off, who understands that if they go into the
hospital uninsured that they have assets that the hospital will come
after suing them if they don't pay their bill. What if they're working
pe rson and the hospital is not going to get the money out of them,
because they don't have any money. These sorts of policies, $6,000
deductibles, are more for the benefit of the insurance company and
for the hospital and for those selling high priced drugs and medical
equipment than it is for the patient. For the patient, she really needs
first dollar coverage, so that when her daughter has an earache, she
can take her to the Urgent Care Center and get both her visit as well
as the antibiotic for her daughte r. That's really what she needs.

Now, she still wants that high end policy, where her child has
leukemia, she gets it covered. I think what we really need to think
about doing is restructuring these policies, so it actually helps that
working family that has maybe $2,000 in their savings account, but
doesn't want to spend it on a single ER visit, and they get a bill for
$5,000. My practice was actually in the Louisiana's Charity Hospital
System. About 90% of my practice for those on Medicaid are those
who were uninsured. I no longer practice. Those are folks who are
working two jobs to pay their rent, and for them to pay a $6,000
deductible is ridiculous.

Mark Masselli: Yeah.

Bill Cassidy: Now frankly, the hospital will lose a little bit, because maybe the
threshold, by which -- above which everything is covered will be
higher than it was before. More importantly, the patient will gain,
because she now has the first dollar covered for her daughter's
earache and for the antibiotic, which her daughter needs.

M argaret Flinter: Well, Senator, we want to thank you so much for the service and the
care that you provided over a career in the charity hospital system,
and the free clinics, and for your support of community health
centers. We've had memorable guests fro m Louisiana on our show.

Senator Bill Cassidy

Your state's health secretary Dr. Rebekah joined us not too long ago,
describing one of the impacts of Hurricane Katrina that you all lived
through. You didn't hear so much at the time compared with the
human suffering, but this wa s the destruction of tens of thousands of
paper medical records, which of course, were always vulnerable, but
Hurricane Katrina really brought that issue to light in a way that no
other natural disaster had. Your state launched an effective electronic
heal th record system and its aftermath. Talk with us about what has
made the Louisiana's record system more robust, and what the rest of
the country might learn from Louisiana?

Bill Cassidy: There was an effort within the charity hospital system, which is
larg est hospitals in New Orleans, to get things in an environment
where you could log on and see everything you needed. A lot of the
other progress has been subsequent to the Obama administration's
effort to promote the use of Electronic Medical Records. Our h ospitals
still have the same problem that every hospital does. You may both
be on Epic, but you still have systems that don't communicate very
well. A friend of mine who's at one hospital with Epic says, if he gets
records from another hospital with Epic, it comes over unstructured,
meaning that is not as in your labs all lined up, so here's the date and
here's the lab, but rather it’s just a mass of paper, and then we flip
through and see what it shows, but that could be in Louisiana we hear
that or it cou ld be in Iowa or Maine or New York. I think we have a
long ways to go to before we have an EHR system, which is as
seamless as tax payers were promised, and which is why taxpayers
put a billions of dollars to achieve.

Mark Masselli: Louisiana has a large r ural population and I know that you're
concerned about how you access and deliver care there. Certainly,
Telehealth Telemedicine is one of those force multipliers, if you will.
As you think about tapping the potential of Telehealth, what's on your
mind in terms of supporting legislation that might be helpful?

Bill Cassidy: There are several issues there. There's one the financial issue, the
regulatory issue, as well as the technical issue. The financial issue, is it
paid for? The administration has recently come out with some rules
saying that if you are in an at risk plan, say, a Medicare Advantage
Program, they really have begun to melt away all the restrictions upon
the use of Telehealth, which is fantastic. That way you're not going to
have some doc ripp ing off the system living in Montana practicing
across the nation, but really doing nothing to value, because now, it's
a capitated program, and you have somebody kind of making sure
that it's done correctly. I think we're evolving to models where it can
b e used.

Speaking of the technical, some of it can be far simpler. Again, my
daughter had a rash the other night, and so I have a friend who's a

Senator Bill Cassidy

dermatologist, I FaceTime Harry, I said what a great name for a
dermatologist. I say, Harry, my daughter's got a rash. He goes, hey,
Bill, I think this is what it is. I'll call her prescription, pick it up, and
she'll be okay. By the next morning, we were on our pathway to
things being done. I think the technical is a little bit further along,
although we have a way s to go. Then the regulatory, I think that we
have issues such as, can you cross state lines, but certainly within a
state, there's not a reason why a group within my state could not help
somebody in a rural area. That said, you could also imagine somebody
in Philadelphia doing tele mental health across the nation, and I do
think we have to figure out the regulatory environment that allows
that to be done.

Margaret Flinter: We've been speaking today with U.S. Senator Bill Cassidy of Louisiana.
You can learn more about his policy initiatives by going to
cassidy.senate.gov or follow him on Twitter at @SenatorBillCassidy.
Senator Cassidy, we want to thank you for your commitment to care, to public service and for j oining us today on Conversations on Health
Care.

Bill Cassidy: Thank you both very much for having me.

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Mark Masselli: At Conversations on Health Care, we want our audience to be truly in the know when it comes to the facts about healthcare reform a nd
policy. Lori Robertson is an award winning journalist and Managing Editor of FactCheck.org, a nonpartisan, nonprofit consumer advocate for voters that aim to reduce the level of deception in U.S. politics. Lori, what have you got for us this week?

Lori Robertson: In the last Democratic presidential debate, former Vice President Joe
Biden made the dubious claim that, "right now the vast majority of
Democrats do not support Medicare for All". The opposite is true
according to a poll published earlier the s ame day Biden made the
claim. The poll of 1,205 adults found that 77% of Democrats and 53%
of all adult Americans regardless of party said they favored Medicare
for All. That's what they said when asked, "do you favor or oppose
having a national health pla n, sometimes called Medicare for All, in
which all Americans would get their insurance from a single
government plan?"

An earlier KFF poll published in January found that overall support for
the idea plunged by 23 points when voters, regardless of party, were
told it would require most Americans to pay more in taxes, and by 21
point when told it would eliminate private health insurance
companies. CNN reported in July that its own poll showed among
potential Democrats and Democratic - leaning Independent only 31%
supported Medicare for All when given the alternative of a public

Senator Bill Cassidy

option favored by 48%. That’s a government run insurance plan that
would compete with, but not replace private insurance. CNN said 12%
didn't want a national health care plan at all.

That's my fact check for this week. I'm Lori Robertson, Managing
Editor of FactCheck.org.

Margaret Flinter: FactCheck.org is committed to factual accuracy from the country's
major political players and as a project of the Annenberg Public Policy
Center at the University of Pennsylvania. If you have a fact that you'd
like checked, e - mail us at chcradio.com . We'll have FactCheck.org’s
Lori Robertson check it out for you here on Conversations on Health Care.

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Mar garet Flinter: Each week Conversation highlights a bright idea about how to make wellness a part of our communities and everyday lives. As the saying goes, music soothes the savage beast and according to a recent study conducted by Queens University in Bel fast, Ireland, there's some
empirical data to back that up. In a first of a kind longitudinal study,
children suffering from a variety of behavioral and emotional
conditions who are exposed to music therapy in addition to
traditional therapies had far bett er outcomes than those children in a
control group that offer traditional therapy without music therapy.

Dr. Sam Porter: It is not a matter of them being given music or choosing music, they
actually make music. The idea is for them to express themselves
th rough music.

Margaret Flinter: Lead researcher Dr. Sam Porter said there has been anecdotal
evidence that music improves the mood in children and adolescents
as well as adults, but his study revealed just how effective the music
therapy was.

Dr. Sam Porter : There were two very interesting secondary outcomes, levels of
depression and levels of self esteem. In the secondary outcomes, we
find a statistically significant difference between the control group
and the intervention group.

Margaret Flinter: Dr. Port er says in the group given musical therapy, it showed over
time more interaction with their surroundings and a better response
to the traditional therapies as well.

Dr. Sam Porter: I mean, that's one of the marvelous things about music therapy is the
thing s that is not, there are no side effects. It is not a dangerous
therapy to get kids involved and it is such a good way and a harmless
way of doing things.

Margaret Flinter: A simple targeted music therapy approach, age appropriate and

Senator Bill Cassidy
showing great efficac y in improving outcomes for young patients with
minimal side effects and lasting benefits. Now, that's a bright idea.
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Mark Masselli: You've been listening to Conversations on Health Care. I'm Mark
Masselli.
Margaret Flinter: I'm Margaret Flinter.
M ark Masselli: Peace and Health.
Margaret Flinter: Conversations on Health Care is recorded at WESU at Wesleyan
University, streaming live at chcradio.com , iTunes, or wherever you
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