Susannah Fox, Chief Technology Officer at the Department of Health and Human Services

(Music)

Mark Masselli: This is conversations on H ealthcare. I am Mark Masselli.

Margaret Flinter: And I am Margaret Flinter.

Mark Masselli: Well , Margaret there is a new job for former CMS Administrator Marilyn
Tavenner, the person who led the roll out for the Affordable Care Act is now heading the
association representing the insurance industry.

Margaret Flinter: Tavenner has been chosen to lead America’s Health Insurance Plans
or AHIP, the trade group that represents the nation’s health insurance industry that is
still recalibrating itself since the passage the Affordable Care Act.

Mark Masselli: She was instrumental in the creation of the passage of the ACA and of
course, she has been in the hot seat during some troublesome times duri ng the launch
of the market places .

Margaret Flinter: It’s also some ironic mark that many of the new rules that she saw
oversaw while at CMS have actually lead to greater restrictions on how insurance
companies can function from the rates they are able to charge, to the profits they can
accrue .

Mark Masselli: Of course at the time of the passage of the healthcare law, insurance
companies were in a habit of increasing the rates by double digits annually.

Margaret Flinter: Well the new healthcare marke tplace is experiencing a lot of shifts
with large insurance companies merging with competitors. So I think we can expect to
see more change in the health insurance landscape as the Affordable Care Act
continues to hold sway over the industry.

Mark Massel li: And you know some analysts that we have talked to say this move as a
sign that the insurance industry is transitioning towards a more conciliatory stance
regarding the health law .

Margaret Flinter: Well Tavenner herself has said that her own appointment as chief
lobbyist for the insurance industry is the signal that the industry is looking ahead to new
opportunities at a time when both access to care and affordability and would value a
vital tools in improving the nation’s health.

Mark Massel li: Another tool to improve health Margaret is healthy food nation
technology, something that our guest today knows quite a bit about.

Margaret Flinter: The last time Susannah F o x was with us, Mark, she was the director
of the Internet Project at P ew a nalyzing the interse ction of health in the internet and she
has taken that expertise to the top in services and we are really excited to have her
back on the show.

Mark Masselli : And Lori Robertson of course will stop by the Managing Editor of
FactCheck. org . She is always on the hunt for misstatements spoken about health
policy in the public domain but no matter what the topic . Y ou can hear all of our shows
by going to CHCradio .com .

Margaret Flinter : And if you have comments , also email us at CHC radio at chc 1 .com ,
because w e love hear ing from you. Now we will get to our interview with Susannah Fox
in just a moment.

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

(Music)

Marianne O’Hare: I am Marianne O’Hare with these healthcare headlines. Taxis and
healthcare law, according to the Federal Government, 7.5 million Americans paid an
average $200 fine for not gaining insurance coverage under the Affordable Care Act in
2014 . The penalties for those not covered in 2015, will go up significantly and open
enrollment is already closed for the year. The fine for not being covered in 2014 was
$95 or 1% of income, and end of life care is finding more acceptance in the medical
are a while statistics show the conversation is being heard and power of attorney and
other patient wishes are being registered in greater numbers. A recent study show
there is still much aggressive care being given for instance to cancer patients, and their
care preference has been adjusted they wanted. The findings published in the journal
of the American Medical Association Oncology, showed clinicians still perform more
critical care into vengeance at the end stage . The Centers for Medicare and Medicaid
s ervices and American Medical Association have come to an agreement on how best to
approach care directors in this end of life discussions, and they say sitting is the new
smoking but what is an overworked, over - screen timed, car commuting average
American worker suppose to do with all this abundance of deadly sitting. It could be a
simple as a 2 minute stroll. Researchers at the University of Utah gathered data from
more than 3000 adult participants, how much they say, stood, exercise and what they

ate du ring the day? What they found was unexpected. A low intensity activity like
standing by itself had little effect on mortality risk but if they replaced it with 2 minutes of
sitting each hour with gentle walking, they lower their risk of premature death b y about
33% compared to people who sat almost non - stop. So you know how the sound goes,
get up – stand up (MUSIC) , and go take a stroll . I am Marianne O’Hare with these
healthcare headlines.

(Music)

Mark Masselli: We are speaking today with Susannah Fox, Chief Technology Officer at
the US Department of Health and Human Services, where she oversees the adoption of
new technology based solutions to common health challenge. Ms. Fox was recently
entrepreneuring residents at the Robert Johnson Foundation. Prior to that, Ms. Fox
served for 14 years as Associate Director of the Internet Project at the Pew Research
Center, where she helped quantify the growing impact on the on internet on health. She
has degree in at Western University. Susannah w elcome ba ck to Conversations on
Healthcare.

Susannah Fox: Thank you for having me .

Mark Masselli: You have been the first woman to be the Chief Technology Officer at the
Department of Health and Human Services, congratulations. So you have got some
wisdom from your experience at Pew and you know we always seem to be at this
interest ing juncture, so may be you can talk to us about how that change is going on and
what are some of the big challenges remaining to facilitate further more practical
adoption of health information technology in healthcare?*

Susannah Fox: Well what I was talk about when I was interviewing to the job was to
talk about the changes that I have seen in the industry over the last 15 years when we
saw how the internet has to mark the ties to access to information and the department
of health and human services has at the same time democratized the access to health
data that was something that my pre decessor the first CTO of HHS, Todd Park created
and that is the open health data movement here at HHS and that is just an incredible
change what peopl e regular citizen and entrepreneurs have access to health data.
What I bring to this role is an understanding that the internet also gives us access to
each other that the social revolution is also one that is taking place and is changing the
conversation s about health and human services in some very interesting ways where
the people are learning from each other, whether its patients who share the same
condition as well as policy makers who can learn from each other about innovation and
that’s really what I do here now at the innovation lab, the idea lab.

Margaret Flinter: Well Susannah, you used the word learning there in the comments
some moments ago and you have been very clear that one of your missions in this new
role as the Chief Technology Officer is to develop these learning system of health
information technology and I think we are probably some early stages on those goals.
So may be describe for us how the internet and health information technology are in the
process of shaping a more functional learning system for health beyond the systems
that we currently have ?

Susannah Fox: What I see sitting here as the Chief Technology Officer which by the
way the role is a wonderful one where I help to run the idea lab and I also advice the
secretary and the deputy secretary about where health and technology are going. We
are going to continue to open up that tunnel for more information flows from clinicians
and from researchers down to citizens. The future is when we are able to start to allow
the info rmation that individual told about their own health, when we are able to allow
that to flow out into the clinical system, into the research system, but we started to
remove the soft barrier between home and clinic because of course when we talk about
patie nt centered healthcare, that really does put the individual at the center and
acknowledges that they have as much as to say about their health and certainly are the
ones who make the decisions about whether to stay on their meds and when to see a
doctor. We need to give people the information that they need, it means open up the
tunnel of information that flows down to the individuals but we also need to start to think
about how can information flow up into the system.

Mark Masselli: Speaking of the feature you recently presided over the Third Annual
Health Data Policy which was gathering of health IT entrepreneurs and developers
bringing their innovating ideas and expertise into the health IT nash - up as it is called
this idea. So it has created new solutions. Can you tell something more about the data
policy this year? What kinds of innovations caught your attention and how they might
truly help power innovation?

Susannah Fox: We sought the community as health data geeks as I like to call them.
We all knew that there was some value and (inaudible 9:38) the accelerant that was
poured on the fire of health data was cloud computing that we now are able to thicken
these big data sets and analyze them , and the rules of the game changed when Todd
Park and HHS released the data and created the data liberation movement. So this
year one of the innovators that I was really intrigued by was a start up called Caveta
which is looking to provide more precise genetic mutations on the people wit h cancer
and that fits in with the President’s initiative on precision medicine. I would see it as
again an opening up in the tunnel of information that can flow from the corner and flow

from the research side directly to benefit individual. Another init iative that came out of
actually started at the VA was when Peter Eleven was the CCO at the VA, it was the
blue button initiative and that’s where we see the potential of data liquidity that the data
really should flow directly to the individual so that they can keep an electronic copies so
that when they get a second opinion, they have the basics of health record, you know,
how can we expand the potential of the blue button initiative.

Margaret Flinter: If you can pick up on something of reference a few months ago, the
idea lab that was developed by HHS to foster innovation from within and I understand
this year’s winners were recently announced, so tell us who the winners where and
what made their proposed innovation so powerful ?

Susannah Fox: I have to give the credit to my immediate predecessor, Brian Civic who
is the CT O who created the idea lab and indeed he is – Todd, Brian and I are all share
the DNA of entrepreneurship and the idea lab is a way to nurture that innovative spirit
that actually is pretty common in the Federal Government . And HHS innovates program
is on e where we are able to recognize people from all across HHS who have created
something innovative, who has sort of met a barrier and just blown right through it and
the winners this year were a pretty diverse group and what I like about is that it shows
ho w innovation can happen in operation and it can also happen when there is new
technology coming forward. An example of the new technology coming forward was the
NIH 3 - D print exchange, you know, I am really interested in the make a movement and
think that the accelerant that’s going to get thrown on this fire is the average cheaper
manufacturing tools . 3 - D print exchange , it is a portal so that people who share an
interest in health related 3 - D printing, if they come up with a template that really works
l ike for example a prosthetic hand, people can download the template and if they have
access to 3 - D printer, they can do that themselves . You know all the innovations that I
have been watching in Silicon Valley and all across the country in terms of the ex ternal
entrepreneurs and the start - up companies that really want to change healthcare for the
better. We see the same spirit here in the Federal Government and that’s why it is so
exciting and such a great opportunity that I could not resist to be part of the idea lab.

Mark Masselli: We are speaking today with Susannah Fox, Chief Technology Officer at
the US Department of Health and Human Services where she oversees the adoption of
new technology based solutions to common health challenges. Susannah I h ave a 13
year old and I would say he is part of this group digital which is part of DNA, but you
have also spent a lot of time thinking about the baby boomers and you have noted that
seniors are actually much more engaged in technology than people think. Can you tell
our listeners about the growing trend, not the baby boomer generations who are
seeking health information on the internet.

Susannah Fox: We have such a wonderful opportunity in that there are so many people
who are using the internet to educ ate themselves, to gain access to the information that
they need to make the best health decision that they can at that time and the baby
boom generation is indeed now one of the most wire generations. They are
transforming the stereotype of the older adu lt. We still need to be sensitive to the fact
that among people of 75 to 80 and above who are significantly less likely to use the
internet, but also the disability increases with age. So when someone starts to
experience low vision, they are less likely to be able to really navigate fairly using a
smart phone. As our population ages with the opportunity presents to us is a chance to
learn from older adults. Usability studies show that if a website is optimized for older
users, everyone navigates it mor e quickly , and s o what might we learn from that. The
demographics show that this is a challenge which is going to be us for a long time.

Margaret Flinter: So in lines with your early work analyzing the internet as a portal for
the engaged patient which I think is fair say has earned you kind of rockstar status in
the engaged patient population and we have had e - patient (inaudible 15:31) on the
show and someone said that engaged patient is still something of a fragile movement,
th
some have called that in fa ct the blockbuster drug of the 20 century, something that
really has the potential to change things and we hear these clearing cries to liberate the
data, so maybe you could talk this a bit about the society for participatory medicine and
this growing e - patient movement?

Susannah Fox: So the term, e - patient was actually created by my mentor Tom
Ferguson who was a Yale trained MD, who believed that people should be in the driver
seat of their own house and so we need to provide people with the information that they
need to make the best decisions that they can about their health. So the E and the e -
patient means also the power engaged because the magic of participa ting in your own
health means that you would have access to your own data and that’s the part of the
blue button initiative that originated here in the Federal Government. The idea that
there should be a simple way for you to download the basic informatio n about your data
and we want to make sure that the data is then made useful and at the center of this is
the sense again of patient autonomy and data liquidity, and those are the goals and by
the way that goal comes down from President Obama and from secr etary Burwell.
They believe in the power of people having access to information and making choices
about their health and that’s part of what the precision medicine initiative is all about.
My colleagues over in the office of the national coordinator for Health IT, they are the
ones who are building the map, who are in - charge of creating the systems that if we
want data liquidity then we need to build systems that are inoperable. From my part as
chief technology officer and director of the idea lab, what I am able to do is talk about

ways that we can fill in these ideas and for example bring outside expertise like
entrepreneurs and residents and innovators in residents so that we can continue to
illuminate ways that data can make a difference in people’s lives.

Mark Masselli: Tell us if you can some of what the roadmap will look like over the next
year or so, as you lay out these opportunities. What should people be marking on their
calendars and who should they be keeping an eye on ?

Susannah Fox: So one of the initiatives that we are working on is pretty geeky but I
think that people who are into health data will really appreciate it. It’s a new initiative
c a lled Demand Driven Open Data, DDOD.us is the website, and that is bringing the lean
start up message to the open data movement where in the past we would upload data
sets to healthdata.gov and data.gov and it is sort of our own schedule. What ddod.us
will do i s just what the name implies, demand driven. We want to hear from users. We
want to hear from our customers about what are data sets that are going to be the most
useful and what are the used cases for those data seta and that’s going to help the
Federal Government , be more service oriented -- more customer service oriented as we
continue to free the data. I should also say that we are recruiting right now for some
entrepreneur in innovative and resident positions, so please come to the HHS website
and c heck out the job listings because the deadlines are coming up fast in August.

Margaret Flinter: We have been speaking today with Susannah Fox, Chief Technology
Officer at the Department of Health and Human Services . You can learn more about
her work by going to hhs . gov or follow her on Twitter by going to @hhsidealab or
@susannahfox . Susannah , thank you so much for joining us on Conversations on
Healthcare today .

Susannah Fox: It was my pleasure .

(Music)

Mark Masselli: At c onversations on h ealthcare , w e want our audience to be truly in the
know when it comes to th e facts about healthcare reform and policy. Lori Robertson is
an award winning journalist and managing editor of FactCheck.org a non partisan,
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: Is Medicaid bad for your health, that’s what Republican Presidential
Candidate and Senator Ted Cruise said . He claimed that health outc omes are
“markedly worse when people get on Medicaid.” Fellow candidate Rick Perry said

health outcomes were no better for those on Medicaid compared with other insurance
and President Obama claims the opposite saying that the Medicaid expansion, the
Affo rdable Care Act improved people’s health. The evidence is on Obama’s side but all
the politicians actually point to the same study and make these claims. Fact study
published in 2013, is called the organ health insurance experiment. It took advantage of
the Medicaid expansion in organ that was based on lorry drive to compare those who
got Medicaid with who those who didn’t. There were several conclusion. Researchers
found no significant improvements in blood pressure, cholesterol, and gloucated
hemoglobin levels after 2 years. Perry focuses on that findings, but there could be other
health improvements after the study that measure or that could show up after a longer
time period. The study also found increased use of healthcare, higher rates o f diabetes
detection and management and lower rates of depression, or finding the white house
singles out. Other study on Medicaid expansion in certain states found a reduction in
mortality rate and a 2013 Kaiser Family Foundation report on the breath of academic
study concluded “having Medicaid is much better than being un - insured.” For more of
these claims , see our website FactCheck.org. I am Lori Robertson FactCheck’s
managing editor.

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 will have FactCheck.org's Lori Robertson chec k it out for you here on
Conversations on Healthcare.

(Music)

Margaret Flinter: Each week conversations highlight a bright idea about how to make
wellness a part of our communities and everyday lives. Food labeling could be going
one step further than simple calorie counts in the future. Public health researchers at
the University of North Carolina have some pep in their step for another approach to
getting consumer’s attention when pondering this food and beverage choices. There is
growing interest in a new approach to display in calorie counts next to menu items,
instead show the amount of the exercise that would be required to burn off of those
calories consumed from drinking say 20 ounce cola. The y developed an icon
symbolizing a person walking and how far that person would have to walk to erase the
calories they are just about to consume. They conducted a randomized study to
determine that if any effect the measure would have on consumer choices .

Dr. Anthony V i era : And we showed them basically a full menu with all items and so one
group was randomized to no information except the food items, another one was a

menu of pretty much every item exact same way and it had the calories and then a third
option had calories plus minutes to walk with all the figure and it had you know for
example 91 minutes and then finally a fourth menu that showed the same exact thing
with the same exact figure with miles to walk so might say 5.1 miles.

Margaret Flinter: Dr. Anthony V i era professor at the University of North Carolina,
Chapelhill School of Public Health. He said the study showed quite clearly that when
consumers saw they are consuming a food or a drink item would require them to walk 5
miles to burn thos e calories out as opposed to just seeing the calories, it had a direct
impact on the choice.

Dr. Anthony V i era : When you shown no label, the average calories ordered were 1020,
when you were shown calories only the average order was 927 calories, and whe n
shown calories plus miles the average order was 826 calories, so as you can see there
was a definite decrease in calories when you show calories plus miles.

Margaret Flinter: The results of the initial study was so conclusive they announced
scaling up the resource to test it in restaurants. Restaurant food labeling showing the
consumer how much exercise will be required to burn out the calories consumed, and
maybe that’s positively impacting their intention to consume few calories more wisely,
n ow that ’s a bright idea.

This is Conversations on Healthcare. I am Margaret Flinter.

Mark Masselli: And I am Mark Masselli. Peace and health.

Conversations on Healthcare, broadcast from the campus of WESU at Wesleyan
University, streaming live at Wesufm.org and brought to you by the Community Health
Center.