Susannah Fox, Former Chief Technology Officer at HHS, Analyzes Young Consumers Push Towards Digital Health

Susannah Fox

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Female : Welcome to Conversations on Health Care with Mark Masselli and
Margaret Flinter, a show where we speak to the top thought leaders
in health policy , health innovation and technology and the top
thought leaders who are shaping the health car e of the future. This
week, Mark and Margaret speak with Susannah Fox , former Chief
Technology Officer at the Department of Health and Human Services
an expert on how Americans utilize the Internet and social media to
gain knowledge about their health. She talks about how digital health
is transforming the health care experience.

Lori Robertson also checks in, the Managing Editor of FactCheck.org,
looks at misstatement spoken about health policy in the public
domain, separating the fake from the facts . W e e nd with a bright idea
that's improving health and wellbeing in everyday lives. If you have
comments, please e - mail us at chcradio@chc o 1 .com or find us on
Facebook or Twitter @ CHC R adio. We love hearing from you. You can
also find us on iTunes, SoundCloud o r ask Alexa to play the progra m
Conversations on Health Care. Now stay tuned for our interview with
Susannah Fox on Conversations on Health Care.

Mark Masselli: We’re speaking today with Susannah Fox l eading health industry
researcher with a special focus on health consumers in the Internet.
She previously served as Chief Technology Officer at the US
Department of Health and Human Services under President Obama.
Prior to that , she spent 14 years at Pew Research studying the impact
of Internet t echnology on consumers in health care. Ms . Fox also
served as Entrepreneur in Residence at the Robert Wood Johnson
Foundation. She earned her BA in anthropology at Wesleyan
University right here in our back yard. Susanna h welcome back to
Conversations on Health Care .

Su sannah Fox: Thank you.

Mark Masselli: Obviously we're calling you from the home of Wesleyan University at
WESU . I'm sure you're familiar with Go Wes .

Susannah Fox: Ya y .

Mark Masselli: You’ve been charting to behaviors of American consumers in their
interfa ce with the Internet for nearly two decades with a special
focus ing on how they access health information. During that time
a ccess to the Internet has become ubiquitous. You say that at no
other time in history have we been able to communicate across the
w orld in an instant with anyone who has k nowledge or experience to
share. I’m just wondering if you could tell our listeners what you've
learned.

Susannah Fox

Susannah Fox: If you think back even just 20 years ago if you had a question, you
were limited to asking your f riends and family or going to the library ,
you might be able to have research of health question in a medical
library. Now that's really blown open. People have access to medical
journal articles in every language. There's so much information that
has been digitized , and even more importantly p eople have access to
each other , meaning , they can put a question out on the network,
whether it's on social media or even just using email and they can get
answers. But so often , people are able to connect with other people
who share the same health condition , who are at the same life stage,
who can answer their question in what , I like to call , a just in time
someone like you . S omeone who knows exactly what you're going
through and can help you at that time.

Margaret Flinter: Well, Susanna h when you’d last joined us you were serving as the
Chief Technology Officer at HHS that was created to foster more rapid
adoption of digital technologies in health care , specifically , to
facilitate the speed of sharing health data a nd to give people access to
their own health records. I think we'd all agree it's been a challenge
for the health industry to provide what they think patients will want .
A t the same time patients seemed to be very interested in health care
apps which might not have anything to do with what the traditional
health industry is providing. How might health care get better at
actually devising solutions that patients want to use?

Susannah Fox: I love this question because it calls on the history of what we have
b een trying to create at the federal government level and at the
industry level , and that is to open up the data warehouses. Big
organizations including the federal government might be forgiven for
getting really excited at the beginning of the data revolut ion to open
up the warehouses that we already had. It did feel really different to
allow people to have access even to just to a small stream of data , but
c onsumers aren't really sure what to do with the information.

For example, I'm still a fan of Blue Bu tton which was a revolutionary
program started in the Obama A dministration first at the VA and now
for Medicare beneficiary . T hey’re actually opening it up to an API so
that veterans and Medicare beneficiaries cannot only access the
information, their heal th record, but direct it to an app of their choice.
That's where I'm starting to see a bridge to the future. A bridge to
where consumers are already using health apps and so much of
health happens outside the clinic.

What we need to do is figure out a way to marry the streams of data,
the stream of data that comes from the clinical encounter as well as
the stream of data that a consumer might be generating with their
wearables , or even better what is the data that could help someone
navigate the grocery sto re in a smarter way , to make better choices

Susannah Fox

about their food . H ow can people sleep better at night ? T hat’s
actually where health really lives.

Mark Masselli: That's very fascinating. Margaret, when Susanna h was talking about
liberating data you think about Todd Park who's part of that sort of
revolution along with you and others . B ut as an anthropologist by
tra de, you're fascinated with the human behavior in society. One of
those demographics you've been most focusing on is the youth
population the so calle d digital natives . I think it's fair to say that
many adults would love to have greater insight into what's going on in
the minds of their teenagers.

You've really taken a deep dive into this group as they're clearly the
most agile navigators of this space . You recently did a study for
Hope l ab a compan y designing digital tools to help facilitate healthy
behaviors . Y our report yielded some fascinating insights and tell us
more about what you've learned.

Susannah Fox: Well, we went into this wanting to make s pace for the teens and
young adults themselves to tell us in their own words what they think.
W e designed it to be a traditional survey where we asked some
questions, statistical numerical data and w e left plenty of space for
open - end ed responses. One of t he most important findings is that
there really is a significant existing market for digital health tools in
this age group 9 and 10 . 14 to 22 year olds have looked online for
health infor mation. Two - thirds of teens and young adults have used
mobile apps r elated to health and they're mostly focused on things
like fitness . B ut there are a lot of them who are using the health app s
to track sleep and meditation.

The other thing that I was surprised by is that 6 in 10 teens and young
adults say they have read o r listened to or watched other people
share about their health experiences . T hey're talking about podcasts ,
they’re talking about watching TED Talks or You T ube videos. Video
especially emerged in the open - ended questions as a huge potential
for health educ ation among teens and young adults.

Margaret Flinter: Well, you know, Susanna h , it's not surprising really given the amount
of time the average American teen spen ds engaged with their smart
phones . T here's been a lot of high profile stories about screen ti me
not being good for kids in the long run, some studies that have linked
to rise in anxiety and other mental health conditions to digital
exposure . B ut I was really struck by one of your findings in particular
that teens are starting to very wisely sensib ly use online platforms to
help them deal with real behavioral health issues. Tell us a little more
about how young people are using digital tools to help them address
the very important and significant personal challenges in a way that
they couldn't befor e and potential of this to democratize in some
ways access to he alth that hasn't been there for kids f ace a lot of

Susannah Fox

barriers to getting the help they need ?

Susannah Fox: In a lot of ways. The Internet and a teenager ’s phone can be a lifeline
as they navigat e adolescence and young adulthood. The two groups
who are in particular need of support when it comes to emotional
wellbeing are teenage girls and young women. They are much more
likely than males their age to go online for information about anxiety
or dep ression. The other group is LGBTQ youth. Three out of four say
they've looked online for information about depression compared to
32 % of straight cisgender youth . B ut again, in talking with young
people directly and giving them space to tell us . W hen you'r e feeling
low, do you go online or do you avoid going online? Do you use social
media? If you do, how do you use it ? W hat emerged in their answers ,
y oung people are not helpless pawns of social media, a lot of them
are actively curating their social media feeds to get inspiration, to find
humor and emotional support.

Other people recognize that it's not a good idea for them to go online
when they're feeling bad and so they self - regulate and they stay away
from social media. There are people who say, I know that social media
makes me feel worse, but I can't stop myself . I t's these vulnerable
youth that we need to be concerned about . W e need to make sure
that we are approaching this with the understanding that young
people's experience of social media is nuanc ed .

Mark Masselli : We’re speaking today with Susanna h Fox, l eading health industry
researcher on h ealth c onsumers in the Internet . She served as Chief
Technology Officer at the US Department of Health and Human
Services . Susanna h , you wrote recently about something that we're
very interested in our practice where one of the early participants in
the All of Us precision medicine initiative . You've noted the rise of
Bios - Citizens and we recently had Larry Smar r on who was probably
the most measured man in the world .

T here seems to be this growing tide of consumers who are gaining
deeper insight into their own health through accessing their personal
genome as well as other health information from wearables. You say
it's spurring a whole new trend in DIY a Do It Yourself health care and
signals another dramatic shift in consumer behavior. I wonder if you
could tell our listeners more about this emerging trend.

Susannah Fox: Well, I've always been interested in going out to the edges of any field
to see what the h ackers and the cowboys are doing . I got to say Larry
Smar r is in that category .

Mark Masselli : He certainly is.

Susannah Fox: In health care p eople who live on the edge of health care are often
people with rare conditions because they so often ha ve to enga ge in

Susannah Fox

experimental treatments which really looks like DIY’s medicine . O ne
trend that I noticed because I started meeting people who were not
only experimenting with tracking data, but they were also making or
adapting physical objects, assistive devices li ke a writing tool for
someone with low dexterity , hacking a wheelchair . I saw how the
maker movement is running parallel to both the Empowered Patient
Movement and the Bio h acker Movement.

What I see is this really interesting confluence where manufacturing
tools and the tools of scientific discovery are becoming cheaper .
W e're seeing more and more people experimenting , creating a DIY
lab. I t's this access to the personal genome to access to
crowdsourcing to experiment in ways that we didn't really have 20
y ears ago . W hat I'm interested to see is how this is spreading into the
more mainstream population because there are a lot of people who
have health mysteries that they would like to solve . I t's not just
people who have access to the highest end tools like Larry. I
personally think it's exciting, but it's also intimidating because there's
potential for mischief . M y rubric , my ethos in general is to open up
access to the information data and tools that people need to solve
problems. I hope that it doesn't res ult in creating problems.

Margaret Flinter: Susanna h , we've talked about the teens and we’ve talked about the
tech savvy people, but coming in from the edges to a incredibly large
going to grow population. We think about the older population and
the older of the older population, you know, the 85 plus who are
increasingly not living in nursing homes . T here's a whole incredibly
exciting focus on really supporting that life and providing the
opportunity n ot to get on a keyboard, but with their voice, get
supp ort in their own home for doing some of their own activities of
daily living, for monitoring, for connecting with other people.

What are you excited about with this group? What are you hearing
from friends who may be caring for elderly parents across the c ountry
or people that you've come across who are focused on this particular
age group that we know is only going to grow ?

Susannah Fox: It certainly is only going to grow. My personal observation, having
been a caregiver and my observation based on researc h, is that caring
for a loved one, especially in older adults, is still a very hands - on
activity. One aspect of care giving that I turned up in my research is
that caregivers are challenged by the complicated schedule of
medications that their loved one is on. W e have all these wonderful
advancements in the pharmaceutical world, but how are we asking
people who maybe have some forgetfulness , who maybe have some
dexterity problems to remember to take these tiny pills in the right
order . I think that's a plac e where technology can really be helpful.
The other place that I see is very important is that elders and

Susannah Fox

caregivers are two groups that are challenged by feeling isolated.

Margaret Flinter: Right, absolutely

Susannah Fox: T hat's again, something that tech nology can help with. There's a lot
that c ould be done with telepresence. There's a lot that can be done
in terms of online support groups. I'm really interested in the
connections between peers. You don't have to leave your loved one
to go to an online su pport group to get that crucial advice or word of
encouragement that you might need. Now the consumer electronics
always has amazing gadgets on display and I love seeing what people
come up with in terms of, frankly , the spying that you can do and
smart to ilets and other gadgets like that. But really I am a big believer
in listening to the people who are , frankly , listening to the people who
were doing the wiping and the swabbing and asking them what do
they need . I don't know that it's going to be that the y need more
surveillance and smart toilets. I think they're going to need more help
with the medication management.

Margaret Flinter: Yeah very practical.

Mark Masselli: Susanna, you're anthropologists and researchers, and I think our
listeners have heard today y ou're forward thinking, visionary . W e just
had Noelle LaCharite on the show and she's done a lot of voice
applications in healthcare . I'm wondering what your thought is about
voice and what's happening in that realm. The keyboard is a little
clunky. Is there any breakdown by age of people who were thinking
about voice applications or do you think that's a whole new frontier
for us? There may be a whole new interface for us.

Susannah Fox: I think voice activation is a wonderful forward step, I think t hat it's an
example of assistive technology for people living with disability that is
go ing to move into the mainstream and it really can't move fast
enough . A mong the hackers and the cowboys of health care , I also put
in that category p eople living with d isability.

Margaret Flinter: Absolutely.

Susannah Fox: They make a way out of no way. What we're seeing in terms of the
assistive technology that grew from screen readers and the ability to
take dictation e ssentially. I will say that my husband recently ha d
hand surgery and so is unfortunately living this where he has to
actually dictate every memo in every email . I wouldn't say he's happy
with the technology that he was being offered right now, so we still
have a long way to go . B ut in terms of telehealth and telepresence,
one of the findings of the H opelab and Well Being Trust survey of
teens and young adults gives a little bit of an indication of a possible
future. 20% of that age group say they have already interacted with a
clinician online, whether it was via text via video. This is an age group

Susannah Fox

that is very ready for telemedicine .

I'm intrigued to see how that grows because we really need to find a
way t o revolutionize access to p rimary c are and m ental h ealth
p rofessionals. I think the future of c linic al c are is home - based more
than we can even imagine right now. Again, I'll put in a plug for peer
to peer health care that there's this invisible network that surrounds
us, of people who could give us advice if only they knew what
questions we were struggl ing with. There might be people in your
father's network who are waiting to help, but they just haven't found
a way in yet. For me it still comes back to humanity. I think most
people do want to help and we'll provide that just in time advice if we
give th em the chance. As the clinic moves more into the home, how
could we tap into that invisible network that surrounds us to stay
healthy ?

Margaret Flinter: We have been speaking today with Susanna Fox, leading health
industry researcher on health consumers an d the Internet. You can
learn more about he r research by going to susannaf ox.com or f ollow
her on twitter @ Susanna Fox. Susanna, thank you for your ongoing
an d important research in this emerging sector of health care for your
kindness and humanitarianism and for joining us today on
Conversations on Health C are .

Susannah Fox: It was my pleasure.

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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 health care reform and
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 US p olitics. Lori,
what have you got for us this week?

Lori Robertson: I n our latest quarter ly update of Trump’s numbers , we looked at
various statistical measures under Trump's presidency . F or health
insurance coverage , t he number of people lacking health insurance
has barely changed since trump took office, but millions are expected
to drop or lose coverage this year and in subsequent years . T he most
recent report from the National Health Interview Survey estimates
that 28.5 million people were uninsured during the first six months of
2018. That's about 100,000 fewer than in 2016. Only 8.8% of the
population lacked health coverage during that time down from 9%
during Obama's last year.

That's a reversal of the trend in Trump's first year when the number
who lacked coverage rose by 700,000 . T rump failed to repeal and
replace th e Affordable Care Act as he promised to do . B ut in

Susannah Fox

December 2017, he signed a pack bill that will end the ACA s t ax
penalty for people who fail to obtain coverage. That took effect this
year. Earlier t he nonpartisan Congressional Budget Office estimated
tha t the end of the mandate penalty will cause 4 million people to
lose or drop coverage this year, rising to 12 million two years later and
13 million in 2025 . T hat's my fact check for this week , I'm Lori
Robertson, Managing Editor of Fact C heck.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'd
like checked, email us at chcradio.c om, w e'll have FactCheck.org's Lori
Robertson check it out for you here on Conversations on Health Care.

[Music]

Mar garet Flinter : Each week Conversations highlights a bright idea about how to make
wellness a part of our communities and to everyday lives. While more
than 20 million Americans have gained coverage under the Affordable
Care Act, some 30 million remain uninsured, and many of these are
either immigrants or without the resources to purchase coverage.
While most c an access p rimary h ealth care in t he nation's community
h ealth c enters and safety net hospitals, many more with complex
conditions simply can't afford access to specialty care. Entrepreneur
J ayanth Komarneni decided to create a virtual way to bypass the
system and founded the Human Diagnos is Project . A network of
volunteer specialist offering virtual consults for the neediest patients.

J ayanth Komarnen i: The Human Diagnosis Project is an online system built by the world's
doctors to understand the best steps to help any patient s . In the
pro cess of developing the Human Diagnosis Project, we realized that
there is an opportunity to develop a system that can ultimately help
solve the problem for those people who won't have access to
s pecialty c are.

Margaret Flinter: Dr. S antanu Nandi is Directo r of the Human Diagnosis Project. He's a
f rontline p rimary c are p rovider in a s afety n et c linic who saw the
opportunity to provide specialty care in a cost effective way.

Dr. S antanu Nandi : The way the system works is safety net providers like myself can
f reely exchange electronic consultations with volunteer specialist
from around the country , so that the expertise of those specialists
have that are uninsured p atients currently can't have access to,
becomes available.

Margaret Flinter: It's estimated that roughly 35% of specialist visits can be done
virtually. The Human Diagnosis Project offers an opportunity to create
real savings in the h ealth care s ystem .

J ayanth Komarnen i : There is a very real and large portion of situations in which providing

Susannah Fox

an electr onic perspective on that given problem will actually solve
that problem for many patients.

Margaret Flinter: Online portal, linking safety net providers, serving underserved
populations to specialty care expertise, improving outcomes for
millions of uninsu red and vulnerable patients. 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: And I'm Margaret Flinter.

Mark Masselli: Peace and health.

Female : Conversations on H ealth Care is recorded at WESU at Wesleyan
University, streaming live at www.chcradio.com , iTunes, or wherever
you listen to podcasts. If you have comments, please email us at
[email protected] , or find us on Facebook or Twitter. We love
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