Your Health Record on Your Smart Phone: National Coordinator for Health IT Don Rucker on HSS Plan to Liberate Your Health Data

Dr. Donald Rucker

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Female : Welcome to C onversations 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 health care of the future. This week Mark and
Margaret speak with Dr. Donald Rucker , National Coordinator for
Health IT at the US Department of Health and Human Services. He
discusses a recently announced initiative at HHS to make everyone's
electronic medical records readil y available to them on their smart
phones at no cost to the patient. They're seeking true portability of
one's own health information.

Lori Robertson also checks in the Managing Editor of FactCheck.org
looks at mis statements spoken about health policy in t he public
domain, separating the fake from the facts . We end with a bright idea
that's improving health and wellbeing in everyday lives. If you have
comments, please email us at [email protected] or find us on
Faceb ook, Twitter, iTunes or wherever you listen to podcasts. Y ou can
also hear us by asking Alexa to play the program C onversations on
H ealth C are. Now stay tuned for our interview with the National
Coordinator for Health IT at HHS Dr. Donald Rucker on C onvers ations
on Health Care.

Mark Masselli: We're speaking today with Dr. Donald Rucker, National Coordinator
for Health IT at the US Department of Health and Human Services.
Prior to joining ONC , Dr. Rucker was Clinical Professor of Emergency
Medicine in Biomed ical Informatics at Ohio State University. He began
his informatics career at Data Medic Corporation where he developed
the world's first Microsoft W indow based electronic medical record.
He earned his undergraduate degree at Harvard, his medical degree
fr om U Penn and his MBA and M S in medical c omputer s cience from
Stanford. Dr. Rucker welcome back to C onversations on Health Care.

Dr. Donald Rucker: Thanks.

Mark Masselli: ONC’s job is to build a private and secure nationwide health
information system that supports m eaningful u se of health data. You
just recently , I think at the HIMSS conference, shared some exciting
new bold initiatives that have come out of the secretary's office,
Secretary Azar and chief among them is a proposed rule to support
seamless a nd secure exchange and use of electronic health
information by giving patients in their healthcare providers secure
access to health information . I wonder if you could share with our
listeners about the new role and what you think is very significant
about this exciting new direction .

Dr. Donald Rucker: Sure, what we're doing and proposing as a rule, it's out for public
comment is to actually allow patients to get their medical records on

Dr. Donald Rucker

their smart phone. I f you think about it, in the last couple years, w e've
allowed patients to get access to their data through patient portals,
right ? But we haven't really allowed patients to control their data,
taking it , moving it somewhere else . I t really is not been possible in a
practical way that sort of reflects our daily realities. W e're really
putting the medical record into that consumer space where we live,
right, where we do whatever it is, Uber or Lyft, or banking , or airline
reservations type of thing . T his role requires providers to actually
have a URL e nd po int , the browser address, that patients can
download their medical records securely using standards based
application programming interfaces. That's a lot of technical jargon, it
means you can take an app of your choice that ingest medical records,
pointed at your provider and get your data on your smart phone ,
p retty exciting.

Margaret Flinter: Pretty exciting. Don it reminds me of so many things in health care
over the last decade or so where all of a sudden health care ago, well,
that's amazing and revol utionary a n d the patients go w hat took you
so long to figure out that this is -- but we know, of course, there are
concerns and complications. I understand that the rule still leave
some unanswered questions as to the how, of course, how we make
all this h ealth data seamlessly accessible to all patients, and at no cost
to them. I say that that's remarkable, because that's such a far cry
f rom what we see today, where patients seeking access to their
information ofte n find out they have to come in, in person and sign a
release. There's a long standing tradition of allowing providers to
charge . Tell me what c ongress defined as information blocking ?
W hat's the vision around that ?

Dr. Donald Rucker: One of the things that you pointed out, with modern application
programming interfaces, we have a whole set of technical
opportunities to do this much more readily than we have in the past.
Congress has heard a lot of complaints , e xactly along the lines, you
outline Margare t, a n d the providers don't want to provide the data. I n
st
the law now, the l aw being the 21 Century Cures Act, signed into law
by President Obama, I assure you, the White House are absolutely on
top of enforcing this access for patients. It is prohibited for providers
to do what's called information b locking, to not provide you with your
medical data electronically.

We were asked at the O ffice of the N ational C oordinator, again, part
of Health and Human Services t o define allowable exceptions . T he
baseline assumption is providers will provide the data to patients
electronically through these endpoints, so you can download it on
your smart phone . Once it's on your smart phone, you can do with it
as you desire. But the exceptions , s o we've crafted out for p roposed
r ulemaking some things around privacy, se curity, potential patient
harm, this would probably be with underlying mental illness type of

Dr. Donald Rucker

issues . T hen also some technical allowances on what the EMR vendors
can charge the providers who have to provide these application
programming interfaces, as well as some common sense provisions.
The computer request can't be acted on , that's an exception or if the
server is being rebooted. But the bas e assumption is that providers,
so doctors in hospitals, through their EMR s are going to provide an
endpoint that a n app of your choosing will be able to download your
medical record.

Mark Masselli: Well, that is just exciting news I think for everybody, all consumers
listening. I think we live in this world of worries about hacking and
cyber security and the like, and that platform might be one that's
vulnerable. To what extent are you working with the companies or
making sure we're going to put it into an environment that safe and
secure and work s for the patient?

Dr. Donald Rucker: Yeah, so whenever you hear somethin g about cyber security, you sort
of really dig into what exactly is the issue , is this just somebody
hijacking a password? Is this a deep vulnerability in the software
because of a bug? Or is this something that where we've actually
consented to allow the data to be reused , right? S o the Facebook type
of or Google type of questions. W hen you look at for the patient
record on the smart phone, the technical stuff is quite secure under
something called o h off to [PH 00:07:42] that's a note alert term for
the e ncryption security protocol . I t's the same thing that ’s used by
banks with your financial da ta .

W e're using state of the art security there , a nd patients have to give
consent . I t's actually very similar to the type of security that ’s used
today, if you log on to a patient portal from your provider . B ut it's
actually more empowering to the patients, because they actually can
revoke consent , they can control it. It 's actually a much more
empowering thing for the patient . T hen patients, I think we'll have to
m ake an assessment of what apps they use to hold their medical data,
just the same way you decide, do I want to use a banking app? You
have to sort of figure out is this an operation that I trust ? P eople will
make that determination, it'll be under their co ntrol which apps they
store their data on, or use to access their data . B ut they will have to,
as with every other choice they make on their smart phone t hink
about what are the privacy implications here, right?

Of course, we give up lots of privacy. A nybo dy who uses Facebook,
anybody who uses Google, anybody who uses a credit card, right?
We've already made many choices, where we've said, you know what ,
we understand they have our data, then we want that convenience . I
think different patients will draw th at line in different places
depending on their clinical issues, the opportunities for the smart
phone to give them better ways of treatment, new ways of treatment .

Dr. Donald Rucker

I think the biggest issue in all of this, that is often underlying
interoperability is so mu ch health care is unaffordable in America . So
many people have massive issues, affording health care. O ne of the
big benefits here is to inject competition into health care delivery
systems that have often configured themselves to prevent patients
from tak ing their data and shopping. I think all of that will come into
the patient side of what they do with their data, but the technical side
is secure.

Margaret Flinter: I hadn't thought about that patient sort of comparison and shopping.
But I wonder if I ca n go back to the information blocking piece for a
moment. My understanding is that the team at O NC has actually
proposed seven exceptions where the patient or another provider
might request health information and the request can be denied. I
wonder if you would tell us what the other exceptions are. I'd also
loved if you could comment on d id you within O NC can be in any kind
of focus groups of consumers or get any feedback on what those
exceptions ought to be?

Dr. Donald Rucker: The e xceptions again, I thin k the exceptions I would look at them as
fairly narrow and fairly specific . T he baseline assumption is the
providers are going to release the data to patients, and that the
patients are in control. I think for too long the American medical
establishment ha s been extremely paternalistic. You know we've all
grown up with other people deciding the health care we get since the
start of Medicare, and maybe even the World War II provisions
around having health insurance , a nd so patients can't decide they're
not s mart enough to have their data. I don't buy into that at all, it’s
just not true a nd it's not right.

T he exceptions are designed to be narrow, the specific exceptions are,
if there's something where we think there would be harm coming to a
patient or anoth er person, this will be very, very narrow I would think .
T he second exception is something where we think that the release of
the information was violate privacy. Again, with all these exceptions it
can't just be like a blanket excuse , t here has to be very specific. The
other exceptions are security, very similar to privacy, in terms of cost,
obviously interfaces, software, access, all of this costs money. But
we've heard a lot of complaints, we've actually met with many, many
folks, in putting these roles together, in particular with a lot of
entrepreneurial firms that would like to provide new services to the
American public, often at much lower costs.

W e hear that the vendor community often is charging a million dollars
for them to have access to the data , charges that bear no relationship .
Yo u can obviously price an API out of existence. Y ou're only allowed
to charge reasonably incurred cost a nd there's also a second provision
of the seven, if you're claiming intellectual property that you have to

Dr. Donald Rucker

license it on reasonable and nondiscriminatory terms. We've heard
complaint s that these APIs are only opened up if the vendor feels that
this might want to compete in this line of business. T hen they won't
let this competitor have access to the data.

T hen the fin al two of the seven, because think about feasibility, an
app is going to an endpoint and asking for something while the other
demands could be infinite, right? I t has to be something that can
actually be provided. T hen finally, if there's downtime, these a re
servers, and as we all know computers need to be rebooted, those
types of things. T hose are the seven exceptions to information
blocking, we think it's going to free up the information for patients.

Mark Masselli: We're speaking today with Dr. Donald Ru cker, National Coordinator
for Health IT at the US Department of Health and Human Services,
which is tasked with building a private and secure nationwide h ealth
i nformation s ystem . Don , i t's kind of an exciting new era that we're
going into. I think one of the things that we've heard from our
patients is that they're smart, but the information tends to be boring,
and not in context. I'm wondering what's going to happen in terms of
the entrepreneurial aspect of Facebook, but really a lot of people are
sharin g information regularly .

I take it what might be occurring is that they have an app that they've
developed, it may be one where they're sharing it with a whole
community of people . I t may be a community of their family and
friends, that we're going to see the entrepreneurs thinking about
ways that if you want to slice and dice this or you can pour something
off and send it off to one of your relatives, you're going to be free to
do that. When you talk about sitting with those entrepreneurial
organizations , a re you hearing people starting to discuss this
development as well?

Dr. Donald Rucker: Yeah, Mark, those are going to be some of the things we've already
seen some of these from, obviously, a number of small companies.
Apple obviously is a large company t hat have done that first step. As
you point out, it can be pretty dry. But I think the real win is going to
be in what I think in the software world is called a mash up. R ight now
if you look at the app, and I don't know, I've heard numbers of
200,000 h eal th apps, I have no idea , I haven’t done personal count.
But if you look at that app universe, you find there's a very small
handful that have access to medical data , a nd then there is a whole
other set of apps about health that have no access to medical da ta,
fitness apps, diet apps . I think the win in the entrepreneurial is going
to be when people figure out new ways to blend streams of
information to come up with entirely new products.

L et me go back to the ride sharing services. I f you just checked out
U ber or Lyft, think about all different things that they've mashed into

Dr. Donald Rucker

that service, right ? T hey've put in APIs to mapping to credit card to
traffic to your consumer database, probably 10 other things under the
covers , r ight? T he win is they've taken a bun ch of things that befo re
were not connectable, right? In the old days if you wanted a cab, if
you ’d even find one you'd call a dispatcher, you never know when
they were coming. We're in that old school era, where y our stuff is
sort of just locked in the ch art. I think it's going to be tremendously
exciting , it’s kind of play out over the years. T he winners here will be
combinations that the three of us on this phone call won't have ever
even dreamed of.

Mark Masselli: That's true.

Margaret Flinter: Well, th at's a very exciting future. W e'll do one now to the past , M ark,
I think and say that we have enjoyed learning from talking to your
predecessors at HHS and O NC, and that have worked so long and hard
to get it to this point .

Mark Masselli: A font of creativ ity.

Margaret Flinter: Really, s o I just want to take a moment and really celebrate all those
people.

Dr. Donald Rucker: Absolutely. M y predecessors hav e laid the foundation for this and it’s
taken a number of years .

Margaret Flinter: I t absolutely hasn’t. One of our favorite lines that came out of almost
two decades of this was Todd P arks [PH] in his liberate the data,
liberate the data for a lot of different purposes. But one of them
absolutely was for the possibility of research to have data sets that we
never dreamed possible to think about ways to improve health,
prevent disease, promote well being . H ow does this most recent
direction increase access to data for research purposes? Are you
excited about that dimension as well?

Dr. Donald Rucker: You know , I think this is one of the things that the new technology has
opened up in some other work we're doing at ONC with the National
Institute of Health on think for science and think for genes, where
we're using these modern APIs to hook up patient records f or
research, allow patients to participate in these research trials. It's very
exciting, right, and of course the patients who are most interested are
the patients with major illness. For them, t his opens up some real
possibilities for new treatments that would actually change their life
in just stunning ways. The beauty of a technology here of these fire
fast health care interoperable resource type of application
programming interfaces, is that we can broaden the entire research
pool of data.

Historically, research has been these heavily controlled clinical trials
where they've used a lot of statistical work with a small number of

Dr. Donald Rucker

patients to extrapolate to the rest of us that's expensive . It often
doesn't include minorities or people who are older or young er, or
different genetic makeup. W e think this is going to allow us to rethink
the enterprise. Interestingly enough, this open A pplication
st
Programming Interface part is part of the 21 Century Cures Act that
also rethink how the FDA handles data. I t's rea lly in harmony.

Mark Masselli: We've been speaking today with Dr. Donald Rucker, National
Coordinator for Health IT at the US Department of Health and Human
Services. You can learn more about this new proposed rules and are
invited to submit comments on th e rule by going to health IT .gov o r
you can follow them on Twitter @ ONC _Health IT. Don thank you , and
as Margaret said, t hank your team for the contributions that you're
making a nd for joining us today on C onversations on Health Care.

Dr. Donald Rucker: Ma rk and Margaret, thank you very much.

[Music]

Mark Masselli: At C onversations on Health Care we want our audience to be truly in
the know when it comes to the facts about health care reform and
policy. Lori R obertson is an award - winning journalist and Mana ging
Editor of F act Check.org a nonpartisan, nonprofit consumer advocate
for voters that aims to reduce the level of deception in US politics.
Lori, what have you got for us this week?

Lori Robertson: In a February Town Hall event on CNN presidential candid ates S enator
B ernie S anders repeated a few claims about health care that we've
debunked before. Sanders said that President Trump thought to ,
quote , throw 32 million people off of the health care they had. But
that figure includes some who would choose to no longer purchase
insurance if the individual mandate penalty were removed, which
occurred this year. The figure Sander s sites is a government estimate
of what would happen if c ongress repealed the Affordable Care Act
without replacing it. President Trump supported the republican
back ed American Healthcare Act, a bill that sought partial repeal and
replacement of the ACA. But when that plan faltered, he also
advocated for an immediate repeal of the ACA with a replacement at
a later date.

A 2017 analysis by the nonpartisan Congressional Budget Office which
fits that replace later strategy did find that approach would increase
the number of uninsured by 32 million people over 10 years , b ut not
all of them would be thrown off their insurance as Sanders said.
S anders also claimed the US is spending , quote, almost twice as much
per capita on health care as any other country. Estimates do show t he
US spend almost double what many other countries do, but not all of
them. The US spent $10,209 per capita in 2017. Tha t's more than
double the 2017 O EC D average of $4,069 per capita. However,

Dr. Donald Rucker

Switzerland spent $ 8009 per capita , and Norway spent $6,351 per
capita. T hat's my fact check for this week. I'm Lori Robertson,
Managing Editor of F act C heck.org .

Margaret Flinter: F a ct C heck.org is committed to factual accuracy from the country's
major political players and is a project of the Annenberg Public Policy
Center at the University of Pennsylvania. If you have a fact that y ou'd
like checked, email us at chc radio.com. We'll ha ve FactCheck.org’s
Lori Robertson check it out for you here on C onversations on Health
Care .

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Margaret Flinter: Each week Co nversations highlights a bright idea about how to make
wellness a part of our communities and everyday lives. Stanford
based bioengineer Manu Prakash has a simple goal. He wants to
create a portable medical lab small enough to fit in a backpack and
he's already developed a tool that fits the bill. While sitting under a
tree in Uganda he notice that the local medical clinics door was
propped open by an expensive centrifuge machine, one that was
reliant on electricity now broken and no longer in use. H e wondered
how could he create a portable centrifuge that would be inexpensive
to make , easy to operate and easy to replace? H is ins piration came
from a simple childho od toy, the Whirligig, a toy that functions by
pulling two ends of a string threaded through around object like a
button.

Manu Prakash: W e spent a significant portion of this time truly understanding the
mathematical phas e for how you can convert linear motion into
rotational motion.

Margaret Flinter: H e took this simple try idea to another level creating a human power
centrifuge made from simple components, paper, twine and plastic.
All together each paperfuge as he calls it , can be constructed in under
two minutes and costs only 20 cents. And yet remarkably, it works
extremely efficiently.

Manu Prakash: With this set of principles we ’ re able to essentially make a centrifuge
that spins all the way to 120, 000 RPM . In the la b we can separate and
pull out malaria parasites from blood , separate blood plasma.

Margaret Flinter: It's currently being tested for malaria diagnoses, but it's being read ied
for far more complex diagnostic challenges.

Manu Prakash: This is a tool that re quires no electricity, you can carry them around in
your pockets f or a price point of 20 cents .

Manu Prakash: T he paperfuge achieved a highly effective field for clinicians providing
a portable solution to diagnostic challenges. Now that's a bright idea.

Dr. Donald Rucker

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Mark Masselli: You've been listening to C onversations on H ealth C are , I'm Mark
Masselli.

Margaret Flinter: A nd I'm Margaret Flinter.

Mark Masselli: Peace and health.

Female: C onversations on H ealth C are is recorded at W ESU at Wesleyan
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