Dr. Roni Zeiger, CEO of Smart Patients

(Music)

Mark Masse ll i: This is Conversations on Health Care . I am Mark Masselli.

Margaret Flinter: And I am Margaret Flinter.

Mark Masselli: Well Margaret, it's National Nurses Week, the week we honor the
nursing profession and the nurses who do so much to improve the lives of
patients in a multitude of setting s, schools, clinics, medical practices, hospitals,
and homes.

Margaret Flinter: Well , that’s right, Mark. You know, there are some 2.7 million
registered nurses in United States and other 70 0,000 license d practical nurses,
and also growing numbers of advanced practice registered nurses , all serving to
improve the patient experience, to improve care , also to research and contribute
new knowledge to the field.

Mark Masselli: I really like thi s year’s theme, Margaret, Delivering Quality and
Innovation in Patient Care . And as we know, nurses are driving those
innovations on the front line of care everyday.

Margaret Flinter: And with the Affordable Care Act rolling out to full
implementation a t the end of the year, nurses , consistently rated the #1 most
trusted profession in the United States , are going to play a vital role in helping
people understand the health care legislation and in meeting their growing health
needs, especially in primary care.

Mark Masselli: It's also National Mental Health Awareness Month , an area of
health care that often gets short shrift.

Margaret Flinter: Not in our setting , I am happy to say w here behavioral health is
fully integrated with primary care and so ess ential to improving health outcomes.
And the Obama Administration has made a significant commitment to improving
access to behavioral health care for veterans but still , as in so many areas in
health care, just not enough behavioral health clinicians to m eet the need which
is great. An estimated one in four Americans has some type of mental health
disorder and a majority of these folks don’t get the clinical intervention they need.

Mark Masselli: Very often , behavioral issues underlie many of the illnes ses that
we a re treating , and addressing the whole patient is very important , including
behavioral health which is so vital to the health and well being of the patient.

Margaret Flinter: Our guest today has been a leader in developing technologies
that a re helping patient communities in improving their health outcomes and in
supporting each other. Dr. Roni Zeiger is the Former Chief Health Strategist at
Google , now the CEO of Smart Patients, a new online search engine and social

media site f or people dia gnosed with cancer , for their caregivers , and for the
clinicians treating them.

Mark Masselli: Looking forward to that. Also FactCheck.org’s Lori Roberton
checks in as she does every week. But no matter what the topic, you can hear
all of our shows by Googling CHC Radio.

Margaret Flinter: And as always, if you have comments, e - mail us at
www.chcradio.com or find us on Facebook or Twitter because we love to hear
from you. We will get to our interview with Dr. R oni Zeiger in just a moment.
Mark Masselli: But first, here is our producer Marianne O'Hare with this week’s Headline News.
(Music) M arianne O'Hare: I am Marianne O'Hare with these Health Care Headlines.
Acting Administrator for the Centers for Medic aid and Medicare, Marilyn
Tavenner , appears to have a green light for approval. Her nomination had been
held up by Iowa Senator Tom Harkin, a democrat upset with the Obama
Administration ’ s budget proposal , which included taking money from the health
care law’s Prevention Fund. Harkin, a supporter of the Affordable Care Act , felt
money allocated for prevention shouldn’t be s iphoned off to set up the federal
online insurance exchange largely because more than 30 states are going to rely
o n the federal excha nge. Senate Majority Leader Harry Reid sa ys he is not sure
now when the final vote for Tavenner will occur, she does have widespread bipartisan support.

Meanwhile, two new studies assert the country’s unusual slowdown in health
spending growth rates in r ecent years may be d ue more to structural changes in
the health care system than to the la gg ing economy, and thus could continue
even after business picks up. National health spending grew by 3.9% a year
between 2009 and 2011, the lowest rate of increase in half a century. There has
been a vigorous debate about whether th is slowdown portend s a new era of
lesser health care inflation or is merely a brief d i p cause d by the recession.
Meanwhile , the slowdown in health cost s since the recession hit amount to an
estimated $770 billion in saved health care costs.
Florida State l egislature ended it s session without a decision to expand Medicaid
where more than 1.1 million uninsured Floridians would have gained coverage
under the expansion. Governor Rick Scott, a Republican, and opponent of the
health care law, did urge legislat ors to put aside ideology and vote for the
expansion. But the legislat ors refused to vote in favor of aspects of the health
care law. The move has cost the state $50 billion in federal money for the
Medicaid expansion. I am Marianne O'Hare with these Health Care Headlines .

(Music)

Mark Masselli: We are speaking today with Dr. Roni Zeiger, Internist and CEO of
Smart Patients, a clinical trial search engine and online social community for
cancer patients, caregivers, and clinicians to improve patient outcomes. Dr.
Zeiger was Chief Health Strategist at Google where he developed programs for
personal health records, Google Flu Trends and Symptom Search. Dr. Zeiger
earned his Master ’ s in Bioinformatics and his M.D. from Stanford University .
He ’ s written several medical textbooks a nd is a physician at Santa Clara Valley
Medical Center. Dr. Zeiger, welcome to Conversations on Health Care.

Dr. Roni Zeiger: Thanks for having me.

Mark Mas selli: You know Roni, you spoke at TEDMED , announcing your new
venture of Smart Patients . Let’s start off talking about your six years at Google
Health , which ended in 2011 . And w hile Google is arguably the world’s most
successful search engine , it did prove to be a place where people felt
comfortable storing or utilizing their personal health information . (05:37
inaudible) starting off with a postmortem o f some body that didn’t work when you
have been so successful in so many fields. But can you give u s a sense of what
the big idea was at Google Health and why you didn’t think it took off?

Dr. Roni Zeiger: Well I think it's a great place to start actually, and we have to
learn from everything that we do whether it's successful or not. I actually thin k
the story with Google Health is probably quite a bit simpler than many people
make it out to be. We had a really good idea trying to help consumers be more
involved in the ir health care as a result of having better access and control of
their informatio n. The problem is that we didn’t do a good enough job of solving
tangible straightforward problems in a way that was easy enough for most people
to do something about. What we didn’t do is not only get people the access to
their data but make it really u seful for them to want to bother doing so. I think we
will see the more successful and be much more focused on specific use cases
and not looking at health record s as a whole. I think we would even ask the
question about who care s about a health record, the question is what problem
are you trying to solve and how are you going to help me solve it.

Mark Masselli: Very good one.

Margaret Flinter: Well, before I move into the future, just ask another question
about that experience . You were not only bui lding a platform that didn’t exist
before and one that would allow people to securely store their data as you said ,
but you also were creating an opportunity for people to volunteer their health
records for research in the medical community, something that I don’t think was
available anytime prior to that . What did you learn from that aspect of the
experience?

Dr. Roni Zeiger: When we look at efforts whether they are in Google Health or
otherwise that ask people to volunteer their data , the same question comes up
and that is , not just to who m and for what purpose and how are you going to
protect it , but how is this going to make me, if not help me directly which I think
actually the answer i s it should , but how is this going to make me satisfied for
havin g done so. I think too often we are asking patients to join us but as a
passive donor of information as opposed to as an active collaborator, and I think
that’s one perhaps subtle but very important difference between where we have
been in the past and wh ere we can go in the future.

Mark Masselli: And I want to pull the thread on a comment you made earlier
about how does the medical record help the patient . And I note that the Pew
Internet and American Life Project noted that about a third of all online searches
have to do with researching some specific kind of medical condition. And so let’s
talk about how these searches are enabling patients to become experts in the
very specific aspects of their own conditions, something you call m icroexpert .
How ca n this expertise be most efficiently used to accelerate improvements in
patient care?

Dr. Roni Zeiger: We are starting to see that people have more sophisticated
questions, understandably if they or their loved ones are sick with something
serious . They will very quickly want to graduate beyond the one o r two pager,
and there is a lot of good information online . There is also a lot of less than good
information. Science is moving so quickly and personalized medicine is actually
arriving with things as futuristic sounding as drug s that target specific mutations
in different patients with what we used to think of as having the same cancer will
get a different treatment based on which mutations are found in the ir cancer. As
things get that sophisticated, the static web pages that we are used to dealing
with on the Internet aren’t enough because the web page about my particular
cancer and my particular subtype and give n the other conditions I may have , that
web page doesn’t exist . And so that’s when we sta rt thinking about how do you
layer the social aspect of the web on top of the content that ’s out there but the
power of the human network that we can lay on top of all the content out there in
different places.

Margaret Flinter: Roni , that’s a great lead into something that you talked about at
this year’s TEDMED Conference where you officially launched Smart Patients so
a clinical trials search engine and social networking and information sh ar ing site
for cancer patients and their caregivers and clinician s w ho a re looking to
accelerate their research . You are cofounder , I understand it is Gilles Frydman ,
if I am saying that correctly , who is founder of the Association of Cancer Online
Resources or ACOR , and one of the first developers of online patient
co mmunit ies. And I know you have partnered with other entities active in the
cancer communities . And have you created a new platform t hat enables th em to
work together effectively?

Dr. Roni Zeiger: Well that’s what we are trying to do. And yes, my cofou nder ,
Gilles Frydman , is a pioneer in the space . He has been building on line
communities , in particular in the cancer world for patients and caregivers for the
better part of two decades . He and I met a couple of years ago and many, many
conversations la ter realized that the timing seemed to be just about right to take
all the learning that he and others have been doing in the space of connecting
people online and provide them with the more modern tools to help them learn
together faster. Imagine that th ere is a group of 1000 patients with a given
subtype of lung cancer. Well a new patient comes to the community and says , “ I
have a question about how often I should be gett ing scanned to check for
recurrence. One of my doctors says this , another one says something else , and I
can ’t really find con sensus by looking online. ” Well a certain subset of that 1000
person network ha s looked carefully at that problem . These are smart people ,
who because they or their loved ones are sick, have become quite expert in their
specific slice of medicine . And there will be a very collegial and frankly
somewhat academic discussion about what the data suggest s , and you might
ask your doctor to follow on couple of questions to decide what ’ s best for you .
You have this ne twork but depending on the question , a different subset of the
network lights up and leads the conversation . And eventually , I think th at we will
be practicing medicine a little bit more lik e this. Perhaps this is how we will do
referrals in the future . But patient s are less encumbered by business processes
and are more interested in experiment ing and are unbelievably motivated and
they are learning how to work with each other in new dynamic ways.

Mark Masselli: We are speaking today with Dr. Roni Zeig er , internist and CEO of
Smart Patients, a clinical trials search engine and online social community for
cancer patients , caregivers , and clinicians . Dr. Zeiger was Chief Health
Strategist at Google for six years. Roni , I want to sort of explore a little more
about the work at Smart Patients. I was sort of thinking about some patients
whether or not we might see the day where the re is sort of an informal meet - up
and people design their sort of own unofficial clinical trial in that context. Do you
see th e field expanding where people take this to another level ?

Dr. Roni Zeiger: I think the idea that’s been proposed by many , and that you are
alluding to, of patients doing more of a self - organizing clinical trial , I think there
are some r eally interesting possibilities . There obviously are also some concerns
in particular about safety. So I imagine that the re are aspect s of that th at will be
part of our future . But I think we are missing something important . And it is very
tempting when something isn’t working well , which I think is fair to say of our
health system , including how we do research and clinical trials , and it's tempting
when things aren’t working to say , “Let’s throw it away and buil d it again , and
maybe this one we will buil d as a totally patient - centered system where the
patient get to figure things out themselves ”. And it's sexy and exciting to talk
about it that way but there are things that the current research system do really
well . And the one thing that we have completely failed to tap into is to tap into
not just the willingness of the patient and caregivers to participate as subject in

trials but the willingness and energy they have to be collaborators, including
collaborators in figuring out well what should the trial look like , bringing patients
to the table when the trial protocol is not yet finalized.

Recruitment takes a long time . It's getting even more difficult as we slice up. So
one of the challenges I think is that when we design clinical trial s today , we
design them wi th no notion of user - centered design . We a re building a product
and we are putting it on the shelf , and the very first time we get any feedback
from the “customer” is after the product has already been desig ned . So just the
simple idea of asking patients what they think about the design of a trial is one of
many possibilities where we can do a lot of collaboration and have a more open
discussion with all the stakeholders including the patient in order to make science
move faster . And I think that’s just a low hanging fruit before we get to the
slightly more sexy topic of a totally patient - run trial.

Margaret Flinter: Roni , there have been so many health - related tools , I am going
to go back to Google for a second , that are really interesting to people su ch as
Zygote Body or Google Flu Trends which we have certainly used during the
various flu epidemics here on the East Coast, and Symptom Search which
change d the way people think about their health and also how clinicians gather
data and also how data is u sed in the public health space. Maybe talk for a
moment about how you see these and similar projects reshaping ways in which
patients and providers share information about medical or public health
conditions.

Dr. Roni Zeiger: The democratization of heal th information that the Internet
brings in general I think is finally catching up to us both in a good way and in an
uncomfortable way in the health space . There are so many of us I think as
physicians, that often wi s h our patients w ould just stay offline because the web is
this big unorganized not necessarily trustworthy space , and it takes extra work
and extra thinking to deal with the questions that come up if the patient also has
several printouts from various searches that they have done. Imagine a f uture
where a patient has the right tools in front of him or her , whether those tools are
because the doctor specifically suggested five websites that he or she genera lly
finds trustworthy , or they found themselves in a community of people who can
give the m real time guidance about what resources are the most usef ul. In any
of those scenarios , the patient can show up to the visit , the ir next appointment
with their doctor not with three misguided questions that the doctor feels , “Boy,
now I have to wa ste ha lf of our precious minutes un learning some things ”, but
instead , the patient shows up with the three smartest questions that in fact some
times the doctor wouldn’t even have thought to ask because the patient has
already gone through some of the basics.

I welcome the possibility of having more efficient , more informed conversation s,
and w hile it's a little bit painful to get there because the tools are far from perfect ,
the possibilities are really exciting . And I think we sometimes fool ourselves in to

th inking how important the doctor ’s visit is . But for most of our patients , they
spend a trivial amount of time with the physician and all of their health , for the
most part t hat ’ s happening the other 99% of the time , and it's unrealistic to
expect that the y are going to remember the most important things to share with
us , as it is unrealistic for us to be the perfect clinician at that moment. So
eventually , we will have a more dynamic ability to interact with our patients
asynchronous but, we are going to need to depend in the future more on our
patients being informed and we are going to need to tap into the talents and
motivation of the patients much more in the future .

17:0 8

Mark Masselli: You serve as a Clinical Instructor at Stanford University Scho ol of
Medicine , and you have written and edited several medical textbooks. We have
looked at how technology is working to improve patient education and
engagement. But what about the medical training environment ; what impact do
you see these technology p latforms having on professional medical training ?

Dr. Roni Zeiger: On end of the spectrum is the use of simulation technologies to
get more realistic experience , realistic from a technical perspective t h a n what we
use to get from textbook . You now get t he train ing on a really fancy dummy .
Obviously, a more realistic experience is going to lea d to better learning ; it’s just
closer to the real context. An d an other area that I think is one of those that we
may be ignoring , imagine this, when I was a medic al student , instead of just
reading about the common manifestations of non - small cell lung carcinoma , I
e ventually sometime in the next couple of years am seeing my first patient with
that illness , instead the first time I read about it , not only do I have the statistically
accurate picture from the textbook but I also have the story of the real person
who is currently dealing with this disease and the ir variant which is not
necessarily representative but is real how it happen ed to manifest for them. We
al l talk about how important it is to start seeing patients early on in the process so
you can put the clinical facts and acumen that you are developing in the context
of real stories and real people ; we all remember some of those earliest patients
that we s aw . And I think now the fact that there are so many context s in which
people are getting together in virtual spaces like in the communities that we are
building and growing , that I think there is some un t apped potential there from a
learning experience . We have already asked the question of several members of
our community , because this is such an interesting possibility , if they would be
interested in some way , not yet define d way , collaborating with medical trainees
so that the trainees c ould start to l earn their medicine in the context of real
people ’ s experience s, in a way that ’ s more scalable and more accessible than
necessarily having to see that person on your rotation in the hospital.

Mark Masselli: Roni , some of the most innovative projects from Google started
off as a 20 Percent Time projects . Can you explain to our audience what 20%

Time actually is and will use the idea of 20% Time at Smart Patients and how do
you think 20% Time might yield in the broader health care environment ?

Dr. Roni Ze iger: The basic idea , as it was at Google when I was there , is that
software engineers in particular who are the ones who really have all the tools to
tinker and build new things , should give them permission of approximately one
day a week or 20% of the t ime to pursue something that isn't necessarily on the
form al agenda . They have an idea and they should feel free to prototype it, build
it and do a non - officially sanctioned or supported project because you never
know where the next best idea is going to come from. And where better to look
for it than the people who have the raw talent , understand the focus and the
goals of the company . And people do their best work when they are excited
about it. Many great projects at Google and I am sure at other com panies too
came out of that kind of thinking.

Margaret Flinter: We have been speaking today to Dr. Roni Zeiger , CEO and
Founder of Smart Patients , a clinical trial search engine and social networking
site for cancer patients, caregivers and clinicians to share best practices in
cancer care and to accelerate the pace of research. You can learn more about
his work by going to www.smartpatients.com . Roni , thank you so much for
joining us on Conversations on Hea lth Care today.
Dr. Roni Zeiger: Such a pleasure to be with you.
Margaret Flinter: Yeah , really appreciate speaking with you.
Mark Masselli: Yeah, really appreciate it.
(Music) Mark Masselli: At Conversations on Health Care, we want our audience t o 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 non - partisan , non - profit 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 ha ve been plenty of questions
about the health care law and premiums, in particular , what the law will mean for
premiums on the state or federal - run exchanges where people who buy their own
insurance will shop for coverage. That starts next year. These exchanges
change the way the individual market operate s . Now this ha s been a market with
hard to predict premiums as it was and the bo ttom - line is that no one know s
exactly what premiums will cost when the exchanges are up and running.
Insurance companies say premiums will go up because they will be required to
accept all customers including those with preexisting health conditions.

Ad vocates of the law say there will be a much larger pool of policyholders ,
including more young and health y people , who will buy insurance because they
will be required to do so.

One thing we do know , many of th ose buying coverage on the exchanges will g et
federal subsidies to help them do so. The most recent report from the non -
partisan Congressional Budget Office pro jected that by 2023 , 80% of the 25
million people buying on the exchanges would get subsidies . How much will they
get ? Well , the Kaiser Fa mily Foundation has a subsidy calculator on i t s website
that can give people a sense of whether they might be eligible and how much
they might get. And that’s my fact check for this week. I am Lori Robertson,
managing editor of FactCheck.org.

Margaret F linter: 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, e - mail us at www.chcradio.com . We will have FactCheck.org’s Lori
Robertson check it out for you here on Conversations on Health Care.
(Music) Margaret Flinter: Each week, Conversations highlights a bright idea about how
to make wellness a part of our communities and everyday lives. By now , it's a
good bet that a majority of health - related New Year’s resolutions have fallen by
the wayside. An international aid organization has d evised a novel idea for
improving health outcomes f or the kids they serve in third world countries while
improving the health and fitness of folks here at home. CURE International provides orthopedic and reconstructive surgeries for impoverish ed children in 27
countries around the globe.
Joe l Worrall : A nd we are there to provide the highest quality surgical care to
them and then follow - up care afterwards to help them deal with things like club -
foot or twisted spine . We treat a lot of burn contractures and cleft lip and palate.
Margaret Flinter: Joe l W orrall , vice president of c ure.org says that the surgeries
to repair club feet and other physical deformities average around $1,000 per child
and they thought what if they could tap into the American desire to attain fitness goals here and tie that goal to raising funds needed to help children in need
around the world , and they launched the Champion Campaign . The campaign
seeks folks to sign up on their website and become part of Champion teams , t o
all make a commitment to lose weight , to increase their fi tness , whatever that
fitness goal might be.
Joel Worrall : You are not just sort of out there on your own ; we are actually
partnering you with an entire team of people who are all hoping to achieve similar
goals.

Margaret Flinter: Team members are there to support one another ’s goals and
each team member solicit s sponsors to support them in their endeavors , and
when the fitness goals are attained , the funds raised go to help a specific child in
need.

Joel Worrall : And we are giving you an opportunity t o actually see the result of
what your hard work is doing in the lives of specific children.

Margaret Flinter: C ure .org ’s Champion Campaign, a unique platform to help
folk s seeking to im prove their own health while providing funds to help the health
of o thers , 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 . P eace and health.

Conversations on Health Care, broadcast from the campus of WESU at
Wesley an University, streaming live at www.wesufm.org , and brought to you by
the Community Health Cente r.