Dr. Kenneth Mandl, Director of the Intelligent Health Lab, Boston Children’s Hospital

(Music)

Mark Masselli: This is Conversations on Health Care. I’m Mark Masselli.

Margaret Flinter: And I’m Margaret Flinter

Mark Masselli: Well Margaret interesting development in Washington this past week
acting administrator of the centers for Medi care and Medicaid , Marilyn Tavenner was on
track to finally being confirmed by the S enate a year and half after being installed but
that is now being held up by a surprising player.

Margaret Flinter: Well Tavenner was chosen to replace Don Berwick who i s the acting
administrator before her. His confirmation you remember was blocked with the
Republicans who are really angry over Berwick’s appointment during a Congressional
Recess , but now a Democrats holding up the confirmation of the President’s choice for
CMS Administrator which is a very influential position.

Mark Masselli: Just when it look like there might be some rare Bipartisan Agreement on
Capitol Hill, Democratic Senator Tom Harkin announce that he was with holding support
for Tavenner he’s usi ng his appointment to register his disapproval of the Obama
Administrations budget proposal, which is taking several hundred billion dollars out of
the Affordable Care Acts prevention fund to pay for other parts of the program.

Margaret Flinter: And as w e know Mark that prevention fund is providing support for
some very important community level prevention strategies across the country. It would
be a shame though to see more uncertainty in leadership and avoid CMS Tavenner’s
full appointment continues to be held up.

Mark Masselli: And t hat it would be speaking of prevention, interesting policy changes
could be underway because of the Affordable Care Act which provide support for
screening of all kinds of diseases.

Margaret Flinter: And the US Preventi ve Services Task Force which we think of is
something of the Bible of preventive services is likely going to recommend that testing
for HIV/AIDS be included as a standard screening that all patients receive.

Mark Masselli: So this is a significant shift in policy, HIV is still a big health problem in
this country of the 1.2 million Americans who have HIV 20% don’t know it.

Margaret Flinter: That’s right , Mark . A nd just to put another number on it there are
50,000 new cases of HIV infection each year re ported in this country. So this would be
a great step forward in reducing transmission because knowing you’re positive is the
first to making sure you don’t transmit it.

Mark Masselli: Our guest today is working to improve the collection of meaningful
h ealth data that could impact public health around the country. Dr. Kenneth Mandl is
Director of the Intelligent Health Laboratory at Boston Children’s Hospital.

Margaret Flinter: Dr. Mandl is a pioneer of consumer health information and bio
surveillance technologies and he’s been exploring ways to create truly integrated health
information systems that allow from much better sharing of health data.

Mark Masselli: FactChecks.org’s Lori Robertson tires to clear up some confusion over
who will get tax cre dits for purchasing health insurance once it’s required in 2014 .

Margaret Flinter: But remember what the topic you can hear all of our shows by going
to CHCradio.com

Mark Masselli: And as always if you have comments e - mail us at CHCradio.com or find
us on Facebook or Twitter we’d love to hear from you.

Margaret Flinter: We’ll get to our interview with Dr. Kenneth Mandl in just a moment.

Mark Masselli: But first , here is our producer Marianne O’Hare with this week’s
headline news.

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Marianne O’Hare: I’m Marianne O’Hare with these Healthcare headlines. The
sequester in healthcare , well Congress had hurriedly moved to remove sequester cuts
from the Federal Aviation Administration . Folks in the healthcare sector are warning of
greater calamity due to the entrench cuts forced by a Congress , refusing to authorize
funds to cover programs that ran out of funding in March. When the cuts cost the FAA
to enact mandatory furloughs leading to leading to thousands of flight delays, certain
members of co ngress booked and move to restore funding for the FAA alone.

Cancer clinics across the country have seen their fund slash due to this sequester and
many clinics are having to Medicare and Medicaid patients on hold, for necessary
chemotherapy and they’re h aving to turn away thousands of potential new patients.
The irony is those patients being turned away by clinics are turning to hospitals for care
where the treatments are far more costly. Advocates are calling for another act of
congress to restore fund s to those patients in need, at the nation’s cancer centers.

And in the speech this week President Obama word of dire consequences a thousands
of medical research programs across the country funds that are necessary for many of
those research programs hav e been cut off since the beginning of March. His fears
have been echoed by many including National Institutes of Health Director Dr. Francis
Collins, who led the team that mapped the human genome, he said for every research
dollar the government spent on that four billion dollar quest, it’s yielded roughly a 120%
return.

And grooming or the kiss of death of report out of the University of California Berkeley
looked at 32 of the most common lipsticks and lip - glosses on the market. They
detected lead, cadm ium, chromium, aluminum and five other toxic metals some of
which were found at all levels that could raise potential health concerns, you might want
to read the label before you packer up.

I’m Marianne O’Hare with th e s e healthcare headlines.

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Ma rk Masselli: We’re speaking today with Dr. Kenneth Mandl, Director of the Intelligent
Health Laboratory, Boston Children’s Hospital’s Informatics Program. He’s also co
director of the Smart Platform Project sponsored by the Department of Health and
Human Services which is seeking to create an app store for health, Dr. Mandl is also co
director of CDC’s Center of Excellence and Public Health Informatics which focuses on
consumer technologies like personally controlled health records. Dr. Mandl is the
Asso ciate Professor at Harvard Medical School and is considered a pioneer of
consumer information in biosurve ill ance technology. Dr. Mandl welcome to
Conversations on Health Care.

Dr. Kenneth Mandl: Well thank you so much.

Mark Masselli: Kenneth you’ve be en called the pioneer in the emerging world of
bioinformatics that is use of real time observational data to monitor those with acute or
chronic disease. You and your colleagues in the informatics program at Boston
Children’s Hospital created the -- indee d, all the electronic health record system back in
1995 real pioneers, and interactive EHR that allows patients to managed their health
records. Medical practices have slowly transition to the use of electronic health records
and you say we’re at this cri tical juncture in health information technology. So , could
you give us an assessment of where we are with health information technology in this
country or more importantly where we aren’t?

Dr. Kenneth Mandl: As you know almost 18% of the gross domestic product is spent on
healthcare, we have the highest per capita spent on healthcare in the world. And sadly
even with that use of our treasure out outcomes don’t compare well to other nations. If
you talk to the folks at the headquarters of Wal - Mart they can tell you nationwide how
many boxes of Oreos are on their shelves in real - time. In healthcare , we don’t collect
and store data in a way that makes it easy to analyze and in fact on many patients we
don’t collect electronic data at all. Another problem is that when a hospital does collect
data electronically they store it locally, this leads to medical errors and also duplicate
testing, both of which are unhealthy and expensive for patients. There’s over 700
different electronic health record products and each one can be customized, so under
the stimulus the American recovery and reinvestment act, a massive federal investment
health IT adoption has moved the needle from around 5% to around 50% of healthcare
settings that are equipped with electronic rec ords and as a result data are accumulating

rapidly. So now the challenge is can we actually begin to align around achieving
specific goals ?

Margaret Flinter: Ken , we’re promoting that they need to become unified and
integrating the data to become a lear ning system. So perhaps for the benefit of our
listeners, talk to us about what you mean by this learning system and how as the
electronic health record systems that you’ve worked with facilitators research at Boston
Children’s as well.

Dr. Kenneth Mandl : Well it would surprise many people to know that the healthcare
system has few mechanisms to improve itself based on its successes or failures. So
when a physician makes a decision about what therapy to give to a patient that is
largely based on her own experience. If a therapy doesn’t ameliorate the patient’s
condition, that physician may get wiser and refine her practice when treating the next
patient. But what’s not happening is that the health system isn’t getting smarter as a
result evolving indiv idual physician’s experience. So we want to create a learning
health system and therefore we need to learn to collect data on all the patients all the
time, you know, very few patients are actually on research studies well under 1% and in
terms of feeding back data into a quality improvement process that tends to happen
very focused areas within healthcare it’s not happening globally . So we need to be able
to collect data and not just form patients in hospital, but also from patients at home.
Most patien ts are having their outcomes and their improvement’s not in the hospital but
at home, we need to be able to take the results of what we’ve learned in this learning
health system and deliver it back to the point of care and to patients at home so that
bette r decisions can be made.

Mark Masselli: Ken , I want to pull a thread a little on that because you wear a number
of hats and one of those is that you’re co director of the CDC Center for Excellence in
Public Health Informatics , s o I guess the question is how is electronic health records in
the aggregation of real time health data and all of these center for excellence impacted
public health analyst and prediction it institutions where they may be deployed, there’s a
little bit of disconnect out there betwe en just having electronic healthcare records, you
are saying earlier in the ability to make some big transformations in healthcare . C an
you talk more about that?

Dr. Kenneth Mandl: Yeah . S o it turns out that even very small amounts of data
collected on whole populations can have an enormous impact on our understanding and
our treatment. We were looking at the spread of influenza and we found using very
simple data stream that was what the patient told the nurse they had come to seek care
for, it’s call ed the chief complaint and we process these chief complaint and we
aggregated them and we were able to actually use those little strings of information to
conduct surveillance across wide areas for the flu.

First of all it turned out to be a better way to do surveillance for the flu than anything that
was being done through much more heavy and overburdened systems that were
producing results that were not very timely. We were able to actually make very

interesting discoveries about the flu, for example we were able to show using data from
pediatric institutions and adults institutions and outpatient practices combined, we could
see this three and four year olds were the ones spreading the flu. And I realized looking
at these data that the spread of flu wa s happening partly because there’s this
tremendous opportunity for it to incubate in daycare centers where kids are just
coughing all over each other, and spreading it very effectively through the daycare and
then bringing at home. And it turn out that th e rates of flu and the patterns of flu in three
or four year olds were highly predictive of the elderly dying of the flu three months later,
because we can collect it uniformly and universally we were able to figure our
something very important and it had an impact because four months after we published
our findings the CDC added three and four year olds to the immunization schedule for
influenza.

Margaret Flinter: Sure we have the opportunity to identified -- I think President Reagan
used to called them the thousand points to like around the country where exciting things
are happening and one that we’ve focused on is the Blue Button Initiative, which was
ruled out as you know with the veterans health administration first and he’s been quiet
successful in getting veterans interested in managing their health records electronically.
How does your system differ from Blue Button or build upon ---

D r. Kenneth Mandl: Absolutely Blue Button is a very simple and very well marketed
concept it means that a patient can get a copy of their electronic health record data and
I’m thrilled to see that it’s there. It’s called the Blue Button because in order to make it
very easy for a patient to understand what they’re doing, the graphic on the web
browser of a patient a ccessing their health record in the veteran’s administration looks
like a shiny blue button. They can push it and actually get an extract of their data, now
it’s very interesting piece of the -- sort of health information economy that has not been
fully a ddressed which is what about patients getting their own information. So
something called HIPAA or the Health Information Portability and Accountability Act
which was passed in 1996 was actually suppose to get patients copies of their data.
There’s been v arious blockades to something we call data liquidity and the high tech act
which was passed in 2009 was also suppose to get patients copies of their data right
away, but they were various impediments again to the data actually becoming liquid.
Finally at this point in time with efforts like Blue Button demonstrating at least that
there’s feasibility of patients accessing their data, we’re looking at federal requirements
in 2014 that really should finally promote export of data from electronic health
inform ation systems out to the patient.

Mark Masselli: We’re speaking today with Dr. Kenneth Mandl, Director of the Intelligent
Health Laboratory in the Boston Children’s Hospital Informatics program, he also co
leads a program funded by the department of heal th and human services the smart
platform which is seeking to create an App store for personal and public health. Ken ,
the ultimate goal of the smart program is to create a unified system that will allow a
single medical app to be enabled for use across mu ltiple electronic health system. So
tell us a little more about the system you team has developed in -- how does this system

compare to the way the apple iPhone promotes innovation in the app development
world.

Dr. Kenneth Mandl: To leverage that inves tment and then to -- and to transform
healthcare into a data driven enterprise. The medical industrial complex must be able
to freely innovate at the point of care and with patients at home, so what happens is
right now let’s say there’s an innovative app lication developed by a small company
that’s really understanding how to help the patients managed their medications but it
would like to have access to data from the electronic health record after all we have
invested all these money in electronic health record data, shouldn’t those data be
available. But what happens to a company like that now, is that they try to integrate at
each side of care and integration at each hospital or practice and it can take a very long
time. So instead wouldn’t it be inter esting to take the kindest model that Steve Jobs
was so successful at, a platform for apps. So that this innovative company could simply
put their app into an App Store just like a Smartphone user s can download an app use it
right in their electronic heal th record system. They compete with each other for ratings
they compete with each other on price, there’s really nothing like that going on in
healthcare information technology now. So what we’re trying to do is create an
ecosystem where the innovators g et a broad market for those apps, because they were
in an app store so they put it in the app s tore, and anyone can access it.

Margaret Flinter: Well I think we look forward to going to the app store and finding
something in the electronic record divisio n that doesn’t have six zeros after the three
that you just talked about ---

Dr. Kenneth Mandl: Right when I first started the project I thought that these apps might
cost , you know, a hundred thousand dollars instead of having six zeros. But now I thin k
they might cost just like other things in the app store, you know, $4.99.

Margaret Flinter: Well there you go, we’re going to look forward to that one but, you
know, we’re obviously scaling up to full implementation of the Affordable Care Act. But
cer tainly within the Affordable Care Act beyond coverage there is this push for more
efficient care delivery and the accountable care organization. So when we look at the
ACO you’ve been I think quoted as saying that you can’t have accountable care if you
ca nt’s count. So tell us how do you envision the smart system empowering the
accountable care organizations to really share that health data and innovate in a way
that does been the cost cur vent and get us better health outcomes.

Dr. Kenneth Mandl: So w hat the app store for health projects smart platforms what that
does is it allows us to have a universal façade on top of this very diverse ray of
electronic health record product, this provides a tremendous economy of scale for
reforming, reshaping the he althcare system, we’ll have new delivery practices certain
types of care will be shifted into outpatient settings or retail health clinics and an
important outcome of the investment in health information technology was suppose to
be that we could provide d ecision support to doctors. To help them provide better and
more effective care, and we don’t have good way to change the data we collect let’s say

the centers for disease control is investigating a pharmacy that compounded a steroid
medication that ended up getting contaminated and was distributed very widely causing
a large number of infections when that steroid was injected. The CDC had to go out
there and a national scale conducts an investigation and also alerting physicians. So if
you have an app b ased approach the CDC can release one app and it could be used in
emergency departments and outpatient settings all over the country at once.

Mark Masselli: Ken, you know, I wanted to go back to your answer around influenza
which I found quiet fascinati ng about the work that you done and people are using
social media in so many different ways, we’ve had Jamie Heywood from Patients Like
Me on the show speaking about the limitless potential and medical research when you
have a group of people motivated to find cures for certain illnesses and willing to share
their real time data. What are some of the social media tools you’re interested in that
will be able to facilitate more rapid meaningful research in healthcare?

Dr. Kenneth Mandl : You know crowd sour cing of information is proving to be an
extremely powerful tool. And also people are in social media all the time, they’re both
on the standard mega platforms like twitter and Facebook and they’re also on health
specific social media sites, like Patients Like Me, like a site that we have done research
with under the CDC center of excellence called two diabetes where we’ve actually been
able to crowd source intelligence from across their population of 35,000 people with
diabetes, who are willing to actually enter and share information with us. So the ability
to just reach out and essentially take the pulse of an online social network enables
really new approaches to what might be called participatory medicine, it’s not just the
data in from laboratories tha t are important in understanding and improving health. It
may well be that there are other sources of big data like twitter, like Google flu trends
that are actually very important to get to our doctors at the point of care. So social
media is producing knowledge and it’s also engaging patients, and its engaging patients
at a much higher rate than other forms of health information technology have done to
date.

Margaret Flinter: We’ve been speaking today with Dr. Ken Mandl, Director of the
Intelligent He alth Laboratory in the Boston Children’s Hospital Informatics Program.
He’s also the co director of Harvard Medical School Smart Platform Program. You can
learn more about his work by visiting Children’s Hospital. Org/Mandl, that’s M - A - N - D - L.
And Ken , t hank you so much for joining us on Conversations on Health Care today.

Dr. Kenneth Mandl: Thank you , it’s been a pleasure.

(Music)

Mark Masselli: At Conversations on Health Care we want our audience to be truly in the
know when it comes to the facts a bout healthcare reform and policy, Lori Robertson is
an award - winning journalist and managing editor of Fact C heck .org , a nonpartisan,
nonprofit consumer advocate for voters that aim to reduce the level of deception in US
politics. Lori, what have you got for us this week ?

Lori Robertson: Well Mark and Margaret there have been plenty of questions about the
healthcare law and premiums. In particular what the law will mean for premium on the
state or federal around exchanges, where people who by their own insurance will snot
for coverage. These exchanges change the way the individual market operates, now
this has been a market with hard to predict premiums as it was and the bottom line is
that n o one knows exactly what premiums will cost when the exchanges are up and
running. Insurance company say premiums will go up because they will be required to
accept all customers including those of pre existing health conditions. Advocates of the
law say there will be a much larger pool of policy holders including more young and
healthy people who will buy insurance because they’ll be required to do so.

A 2010 survey by the Kaiser family foundation, found an average annual premium of
seven thousand one hundred and two dollars for a family of two or more. Premiums do
tend to be lower than premiums for the employer sponsored plan but the individual
market folks also tend to pay higher out of pocket cost, one thing we do know many of
those buying coverage on the exchanges will get federal subsidies to help them do so.
The most recent report from the non partisan congressional budget office projected up
by 2023 80% of the 25 million people buying on the exchanges would get subsidies.
How much will they get well the Kaiser family foundation has a subsidy calculator on its
website that can give people a sense of whether they might be eligible and how much
they might get it does give some estimate of what you might see in 2014 .

A nd that’s my FactCheck 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 is a project of the Annenberg Public Policy Center at the
University of Pennsylvania. If you have a fact, that you would like checked, email 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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Mark Masselli: Each week, Conversations highlights a bright idea about how to make
wellness a part of our communities and ever yday lives . America is aging and along with
that fact managing more and more chronic disease while many of these illnesses are
manageable outside the clinical setting some put patient s at higher risk for medical
emergencies while conducting the business o f their lives. Inventor Cesar Camacho
thought why not make a bracelet that can be comfortably worn with a portable software
program and USB plug that can be used to input all of the essential medical data into
any computer. He developed the care of medic al history bracelet on which a patient’s
medical data is stored things like blood type chronic illness descriptions, medications
even copies of x - ray images o r CAT scans.

Cesar Camacho: So , you have a general information about yourself like insurance
pol icies , your telephone numbers , and addresses for all your doctors.

Mark Masselli: The care of medical history bracelet can also store other vital
information if the patient is having a medical crisis or can’t speak for themselves .

Cesar Camacho: It is important to have the right information at the right time, and you
know and nowadays as you know we got the best doctors in the world, but they’re only
as good as the information that you provide them.

Mark Masselli: The care of medical bracelet also has been program to process data
from brail text in currently comes in bilingual versions both in English and Spanish , a
simple wearable USB device that can offer critical medical information for patients who
are unable to speak for themselves, assisting medi cal professionals coming to their aid
in a crisis, now that’s a bright idea.

(Music)

Margaret Flinter: This is Conversations on Health Care. I am Margaret Flinter.

Mark Masselli: And I am Mark Masselli, peace and healt h

Conversations on Health Care broadcast from the Campus of WESU at Wesleyan
University streaming live at www.wesufm.org and brought to you by the Community
Health Center.