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So good morning and welcome back for the second panel of the day. I appreciate you
coming back. My name is Chuck Westbrook. I’m with the American Cancer Society,
and the title of this panel is Aligning Forces for Impact, which I like a lot because it
makes it sound like there’s a big plan to hit a goal for maximum effect which is a lot
different from the industry which I fled—I mean left in 2001. I was in broadcasting and
then in new media for CNN and we were so quick, the broadcast industry and new
media industry is so quick to adopt this change called the Internet that of course there
was no unification of purpose because everything’s so competitive and it effectively
destroyed newspapers as we know them today. And that model of free information for
everyone, everywhere has made it so that even Facebook can’t make money. At the
previous conference, I heard a lot of great ideas and we talked about how a lot of those
great ideas seem to be trapped within the pages of journals and as we talk about
technology and other ways to make an impact, you know, I’m also seeing that there are
a lot of good ideas out there, a lot of technologies out there that people are just slow to
adopt maybe because they’re not effective. But, for instance, the very first commercial
use of email was in 1989. There are a lot of people in this room who have—well,
maybe not a lot, but there are some people in this room who have no recollection of
world without email yet only about 20 percent of physicians communicate with their
patients via email right now. You’ve got two thirds of clinicians saying that they’re going
to have difficulty integrating EMRs into their workflows, 66 percent still communicate via
fax, 91 percent of hospitals use pagers still for all really good reasons. I mean I’m not
saying this is wrong. It’s just the way things are. So as we sit in a conference that is
tweeting and I think we’re trending really high right now, as we are—you know, maybe
some people are nonplussed on Google Plus, but I think we’re doing fine. We have WiFi not—right? So we are very connected with everybody but the room and maybe we
don’t need to be because you’re actually already here, but do you still feel deprived a
little bit? It’s strange. And, you know, so this expectation around connectivity is very
important and as things are changing and we know they are, everybody in this room
knows that they have to, the question of how is this going to be aligned to affect that
change and how are we going to create the best messages and deliver those to
audiences in a way that they can make a difference. You know, what’s going to
motivate that change. You know, we can create an impact and that’s what we’re talking
about on this panel, but what direction and what purpose? So we’re going to model this
panel the same way the other one was with most questions coming after the entire
presentation. Our first presenter actually has to leave a little early, so we’re going to
ask you to have questions for this presenter right after his presentation but otherwise
hold the rest until the end. And our first presenter is Dr. Farzad Mostashari. He is the
National Coordinator for Health Information Technology within the Office of the National
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Coordinator for Health Information Technology at the U.S. Department of Health and
Human Services. He joined the ONC in July 2009. Dr.?
Thank you.
Oh, you already have your own mic.
Thanks. Can folks hear me okay? Good. I want to talk a little bit about the quiet
revolution that’s happening in how patients are cared for, that along with the real sea
change in how care is paid for and how people can take care of themselves, I believe
are going to combine to put the best days of medicine ahead of us not behind us. The
quiet revolution on the how care is delivered side that I see most clearly is the means by
which information is collected, stored and used, the switch from paper to electronic
health records, and as Chuck said, the electronic health records have been around for
decades, but their adoption was pretty slow and spurred by the investments and the
recovery act we’ve made really more progress in adoption of electronic health records in
the past two, three years than we had made in the 30 years before that, so adoption has
more than doubled in hospitals and in primary care practices and doctor’s offices small
and large, and by the end of this year, most health care delivered in America I predict
will be delivered through electronic health records, but what does that mean? What
does that mean for patients? What does that mean for docs? The payments for—the
incentive payments for health IT are predicated on this concept of meaningful use, that
it’s not just having the system that—getting improved quality or cost or patient
satisfaction, but it’s how the systems are used and we’ve defined with our health IT
policy committee which includes stakeholders and lots of—thousands of comments and
our regulatory process which actually really does work to get that amazing amount of
feedback and transparency in. It lays out a framework and it says that the electronic
health records have to do things like be able to measure quality, provide decision
support, collect the data and structure it, but I think the patient engagement aspects of it
are in some ways the most interesting, so for people to be able to get a copy of their
own records in electronic format if need be, that it’s not just you’re right under HIPAA,
which it is. I’m always amused when patients tell me that they went to their doctor’s
office or hospital and they told them they couldn’t give them their records because of
HIPAA. Itis quite the opposite but they have a right to, but we should make it easy and
we should make it easy for people to get online access to their own health information.
It also says that there should be patient education materials shared through the
electronic health record. At the National Library of Medicine we have a link now that
lets any electronic health record retrieve that information in a usable way at the
appropriate literacy level for patients. It says that patients should be sent reminders.
What a concept. You know, if you have a cat, you get a reminder. If you have a car,
you get a reminder. If you have a dentist, you get a reminder. But typically we haven’t
been doing that in medicine. We kind of wait until the patient walks in the door and we
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say can we help you. Well, gosh. That’s great for selling shoes, right? You wait until
the person walks in and you say can I help you. That’s totally appropriate. It’s a
customer relationship but being that patient-physician relationship is supposed to be
more than that commercial transaction if you choose to, right? We should have a sense
of the people who didn’t come in and maybe they are the ones who need our attention
and consideration more than the ones who keep coming back in. So really being able
to do what’s called population management and to be able to look at that wonderful
invention, the denominator of all my patients, how am I doing, who hasn’t come in, be
able to make a list and reach out to patients. So there’s some really powerful things in
meaningful use in stage 1 and soon we’re gonna be releasing the roadmap for what’s
gonna be in stage 2 and that includes—in our proposed rule we’ve included things like
reporting to cancer registries that might be of interest to you to establish with our
colleagues at CDC and the National Association of State Based Cancer Registries for
the first time really an implementation guide for how every electronic health record can
include the standards for reporting to those cancer registries and the providers can get
credit for that. We also proposed secure messaging. Why not? I know that there are
lots of concerns on the part of providers that it’s gonna be this onslaught of, you know,
uncompensated care through having to respond to these messages, but, you know, we
already respond to phone calls and it’s not very efficient and many of the groups that
have actually embraced this have found that it’s much better and less disruptive for
them to be able to stack those, to have all the documentation there immediately. So a
lot of this though takes getting used to, and it really does come down not only to a
technology issue but to cultural issues, the culture of medicine and health care. It’s
funny being the technology guy talking about culture, but it’s true. Culture eats strategy
for lunch. As important as the medical realm is and we certainly—in the roadmap for
the future we can see really terrific, great things for improving cancer care, improving
the care of patients, improving research through the use of electronic health records
and the standards around that, so some of the discussions in our policy and standards
committees, the vision for the future has been really creating, not just structuring the
data and collecting the data and sharing the data which is the emphasis for stage 2 and
sharing it with each other and with patients, but how can we learn? How can the
system generate the knowledge that it consumes itself and how can we democratize
that learning so learning doesn’t only take place in these benchmark institutions with
multi-million dollar NIH grants? How can we make that store front in Harlem also
contribute to the learning and creating that knowledge that it generates? So this is
something that we’re exploring with our colleagues at the National Cancer Institute and
the NIH in general but how can we make kind of disruption in a positive way, in the
classic Clay Christensen sense of the word? Disruptive innovation around how
research is done. We recognize that not every element in a clinical trial can be
collected in electronic health record, but maybe the screening can be done and every
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provider no matter where they are can be made aware and alerted to a potential clinical
trial for patients so that we improve the current what is it, four, five, six percent of
patients say with lung cancer who ever are able to take part in a clinical trial. So those
are I think important advances for care of patients through the medical establishment
and we already talked about the speed with which the medical establishment, the
dynamism with which the technology there evolves, not very. We have the distinction I
think of being the last remaining reason why fax machine companies are still in
business. But what does evolve with a breathtaking dynamism is the consumer
technology space. I mean if you think about some of the things that we just heard
talked about, Twitter and even Google, of the iPhone, it’s hard to believe now that it
didn’t exist just a few years ago much less an app economy. To be able to bring that
health care IT marketplace to focus on solving the real problems people have, people
don’t want data. They want to solve problems, right? We all know that. So let those
innovators help. Not just help the doctor find a clinical trial, but help the patient find a
clinical trial that’s good for them. Why not? Why can’t patients be able to get a second
opinion easily? I was at TEDMED last fall and Lance Armstrong—anyone here from
Lance Armstrong Foundation? Call out to you. Lance said—I mean this guy was like
one of the most empowered individuals, right, ever in history and he said he felt like he
couldn’t ask for his medical records to get a second opinion. Why can’t we make it
okay? Why can’t we shift the attitude so it’s encouraged to get your own medical record
and share it with who you want and get the help you need and create that opportunity
for others to help you. We heard in The New York Times the really poignant story of
Life, Interrupted. Amazing, right? And here she is dealing with her illness and what is
she worrying about? The bills and if a doctor who walks into the room, are they going to
charge her and is her insurance going to cover that or not. Why can’t we have help for
managing our health care finances? When my dad got out of the hospital looking at a
table full of EOBs and bills and bundled things and some things that were and some
things that weren’t, anyone who’s had that experience will tell you, someone should
help me here. And there are companies, startups, innovators like Simply and Care
Planners and Castlight who want to help, but we need to let them in. We need to let
them help. I can’t tell you the number of innovators where you talk to them and I say
how’d you get into this. You know, you worked for, you know, Microsoft or, you know,
Facebook or whatever and now you’re building this app for health. Why? And they say
all too often well, I got hospitalized and I thought this is nuts. There’s gotta be a better
way to do this, and every person whose loved one ends up interacting with our health
care system feels the same way. This is nuts and there’s gotta be a better way, and I’m
actually tremendously optimistic that by working on access to patient information,
changing those attitudes and working with groups like the Association of Nurse
Informatics to say we should ask for our records, what’s in your record, do you know
what’s in your record? It’d be interesting to find out. We have a video challenge on
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that. What’s in your record? Changing attitudes and then letting people take action,
letting them be able to use that data, their own data, community data, the best of—the
most latest scientific research mashed together they say and help them take action to
do things they need to do to help improve their quality of life, the longevity of their life
and helping them manage their health and health care finances. So that’s the vision
that I have, and I’m actually tremendously optimistic that with the advances we’re taking
in technology, with the changes that are happening in payment that I think are
tremendously positive across Medicare and Medicaid and commercial plans shifting
from just volume based payment to value based payment, bundles of payment,
coordinated care, rewarding that full process, not just individual tasks and with the
transformational possibilities in the consumer information technology space tomorrow
can offer that unique promise that technology brings. All right, I’ll go back to my roots
here. That tomorrow can be better, tomorrow can be faster and cheaper than it is
today, that unique promise, and let’s bring that promise to health care. Thank you.
I would invite anybody who has a question to approach one of the microphones in the
room. Okay, thank you.
Very nice talk and start. I think we’ve heard this morning this issue of curation.
Yes.
And I think the difference between Daniel’s presentation this morning and Durado’s
presentation, the idea of old information and Durado’s concern that there’s ambiguity we
can’t—how do you interpret this? So I’m wondering where you stand on the issue of
just let it go, just let the information out there and the potential downside—whether there
are potential downside consequences or whether in fact we’re at a position where that’s
what’s going to happen. We just need—we as—I’m a physician. I was a practicing
physician at one time, whether in fact what we need to do, the culture change that
needs to happen is that docs need to step back and say let it go. In fact, there’s gonna
be misinterpretation. That’s the price.
I’m sorry. I wasn’t here for all the discussion in the earlier panels, so I can’t make—I’m
gonna make sure that I say what I believe in terms of that and not mislead you in terms
of agreeing or disagreeing with certain points of view, but in my view we have to make it
a lot easier for patients to get their own data and in that sense yeah, let it go. Let it go.
And yeah, there will be some who get freaked out less than people thing and there will
be some who won’t know what to do with it or won’t want it and that’s okay too. But I do
think that we can’t hold onto a model where there is one all knowing, you know, usually
male physician who curates all that information for you and takes care of every—all your
informational needs. We have the average Medicare patient seeing 15 different
physicians now. Who’s that person and they want to be able to move their information
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and they want to be able to access other sources of truth, and I think we need to let it go
and—to where the patient—to the patient and where the patients wants it to go. The
issue of privacy of course of just saying like oh, you don’t have any privacy, get over it
all they have heard is let go of the information so that anyone can access it, no, I don’t
buy into that at all and I think that we have to, if anything, be ever more vigilant on
making sure that the flows of information match what patients’ expectations are in terms
of who would have access to that information and who wouldn’t have access to that
information.
So, again, Farzad, that’s a great vision to put out and I’m (inaudible). I work at the
National Cancer Institute and I’m also long-term cancer survivor, so from a cancer
survivor perspective, I applaud you for this vision obviously. Patients and survivors and
family members want this to happen, so—
I want to applaud you too.
So the question is - there is the tension in me - the researcher and the survivor. The
researcher knows that the tomorrow doesn’t come tomorrow; the tomorrow comes 10
years down the road okay? We know it takes 17 years, whatever that statistic is for
things to happen from bench to application and the cancer survivor in me wants the
patient (inaudible) to happen tomorrow.
Now.
So what’s your advice to, you know, the American Cancer Society, CDC and NIH that’s
here in terms of what needs to happen so that we do aggressive research at the same
time, make the tomorrow not happen 10 years down the road?
I think we need to be more impatient. I think we need to be more urgent. I think we
need to build today what we can build today and if it’s something simple, that’s okay.
Let’s start simple, but let’s start, and I tend to be of the point of view that the future is
here. It’s just not evenly distributed as someone said and let’s find where those bright
spots are, where you can see the future and let’s spread them. Let’s build on what we
can do today and do less—be less patient for the 10 year horizon.
As a cancer survivor who’s carried my own data with me from one health provider to
another, what about the issue of interoperability?
It’s absolutely key, right? We can’t have local ways of recording your medications in
one place and another place so that even if you could get an electronic copy they’d say
well I don’t know what this is. The codes don’t match, right? Lab values, even the
diagnoses, so we have to be able to speak common languages across the different
systems and the health IT incentive program I spoke about, it comes with strings
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attached. The vendors and the providers and the hospitals have some pretty rigorous
requirements to meet and among those requirements is you’ve gotta start standardizing
this stuff guys. So we’ve put out for the first time in our proposed rule a single way of
recording medications across all these different systems that can be mapped to each
other a single way of doing diagnoses and problems, a single way of representing
immunizations, a single way of representing procedures, a single way—and you get the
picture. A single way of packaging patient information and making sure that every
electronic health record can catch and throw with any other electronic health record.
There are proprietary business interests that have historically resisted that, but I think
that’s also changing as it’s becoming clear that payment is gonna be based on providing
more coordinated care and some of those silos are falling away.
Final question.
Last question.
Hi, I’m Ellen Beckjord from the University of Pittsburgh and, you know, electronic
information isn’t necessarily integrated which is what we’re just talking about now, but it
can be integrated, but integrated information isn’t always actionable. What are your
thoughts on how to make integrated electronic health information really actionable for
consumers and for providers?
One of the entrepreneurs I was talking to is Phytel, a company that is doing analytics,
big data analytics and coming up with actionable alerts and they’re selling to doctors
now, not to health plans doing disease management. They’re selling to doctor’s offices.
Amazing because the business case has changed. He said to me data is oxygen.
Oxygen is the fuel we run on, right? And there’s a lot more oxygen in the air now, so I
think the answer to that is not for us to have grants or contracts or anything, but just to
create that oxygen, the availability of data for the entrepreneurs and innovators and the
incentives. So I think incentive plus information equals magic. And that’s where I think
we’re headed is having the information available, having the incentives right and
standing back and letting those who can create those new products and services get at
it.
Very good.
Thank you so much.
Thank you very much. Okay, so, again, thank you so much for making the time. I know
that some things have come up and you’ll have to leave us now, but we do appreciate
your time, and as we de-mic you here we’ll move on. Our next speaker is Tom Kean.
He’s the President and CEO of C-Change: Collaborating to Conquer Cancer. Tom’s
devoted more than 35 years of his career to chronic disease prevention and control.
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He’s served government, not-for-profit and for profit institutions in progressively
responsible positions as a health educator, evaluator and senior manager administrator.
His assignments have included the University of Texas System Cancer Center, the
National Cancer Institute and the AMC Cancer Research Center and a position on this
panel today. So Tom, thank you for joining us.
Are they pulling slides up from below?
Let me get them for you.
Okay. So good morning, everyone. While he’s doing that let me just tell you my slides
are going to be very simple compared to the others today. My technical consultants
also known as my grandchildren were busy starting school this week and were unable
to assist me.
END.
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Awesome. So I’m gonna take just a few minutes today and I’m really gonna run through
a very complex story in a very short amount of time. I want to thank CDC and NCI and
ACS for putting on this conference. I’ve already learned a whole host of things today
and look forward to learning more through the rest of the day and from my fellow
panelists. So I’m gonna focus actually more today and how we get things done and
how we organize ourselves to get things done than I am necessarily on the content or
the channels that we use, and I do have some things to say about messengers following
the previous thing. So I’m gonna do a quick race through. I’m always available by
phone or email, dreaded, hated email if you ever want to follow up with us, and my
colleague Payal Shah is here in the room. You can wave. Any really hard questions
you can ask her. So I just—for those of you who don’t know, I just want to give a quick
overview of C-Change just as to who we are because it does impact on what we talk
about or how we’re gonna talk. We were formed in 1998. We’re made up—our
members represent and come from 150 plus organizations in the cancer arena. We are
a three sector organization – public, private, not-for-profit. It is a unique collection of
people, highly eclectic. We have everybody from the far right to the far left and
everything in between. And I must say, this idea that we have about how to organize
ourselves I think makes a lot of sense to me and essentially I’ve tried to characterize it
in this fourth bullet here, and that is if you put people in the room and you say to them
so okay, we’re all doing our own separate thing and our own separate mission but the
real question is what’s going undone that we might do together that actually would
advance our cause. That’s the core concept that underlies almost everything that we do
in C-Change, so it requires collaboration as a part of that model and it requires us also
doing some thinking together about where we wanna go. Same time, we’re always
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looking for a unique niche. We’re not trying to put ourselves in a place of competing or
duplicating what others are doing and since most of the organizations are in this room
that come from C-Change, we hear about what you’re doing so we don’t wind up
creating duplication. The end of the day though we work through our members. We
have a very small staff, very small budget. We work through our members to get our
work done. We have six strategic initiatives. I’m gonna only talk about one today and
that’s some work that we have been doing in the area of prevention and risk reduction.
So I wanna talk just very quickly about two campaigns, one building on the other, and
I’m gonna start with what we began doing—if you look on the right hand side of this—in
about—well, actually, we started about 2005. It came to fruition in 2007. And this was
an effort on our part to try and bring people together around the notion of could we
common message around prevention. Brad mentioned today there’s a lot of confusion
about prevention messages out there. Remains huge amount of confusion. We were
trying to look at that issue and we wound up in the process of that of settling on a risk
reduction message as the primary platform. We did that because we found that when
we did some of the testing around different message options people were more willing
to buy into a reduced care risk message than they were into a prevention message, at
least as it applies in the cancer arena. And then you’ll see there are sub-segments
about that that relate to things like getting screened, which we call, you know, checking
your status, tobacco, physical activity and obesity. So now what I wanna do is just
move a little more into the detail of what we did in that and then how that came back to
inform our second effort, which is based on our risk reduction platform that we’re using
now. So this issue of common messaging, here was the idea basically. The problem
that we were struggling with as we went through all of this was that lots of people are
messaging around prevention. Interestingly enough, I think most of the people who are
messaging are reaching their own constituencies and their own audience and so one of
the things that we were thinking about as we went through this was this notion of well,
most of us are saying pretty much the same thing at the end of the day. If you think
about tobacco, the final messages for the end user are not all that complex. The way
we nuance them, the way we frame them, etc. may be different but our members began
saying is there a way that in fact we could work from a common messaging platform
where we embed in that in our own messages and allow us essentially to communicate
to the public so they see the same look from multiple sources but they’re also seeing it
from the ones they take to be credible at any one moment. So we started out with this
notion of developing common messages aimed ultimately at the public with an intent to
influence behavior. We did a lot of the critical formative research that everyone does.
We all know those methods, etc., and eventually came to the common message and
platforms that I just showed you a moment ago. Those platforms were made available
to our members so that they could adapt and adopt them to their own campaigns. You
don’t see C-Change in any of those platforms. We don’t own any of them, and in fact,
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they’re sitting on our website now along with all the formative research we did and along
with a lot of B material that you can use to help support it. Any of you can go to our
website, download it now. It belongs to you, not to us and we’d be happy to have you
use it. Now the next critical step in this though is engaging organizations to actually
pick up common messages and that had to address the issue of uptake ultimately. And
from this effort we learned some messages. I’m doing this really quickly here. First of
all, there was a lot of enthusiasm engagement about developing these ideas and we got
a lot of good information and ideas from our members, and I think we hashed out some
really good ways to approach this. We did extensive research leading up to this and
that research was well received by a lot of people and we wound up with some pretty
cool platforms that actually tested very well with the audiences that we were interested
in for this particular effort. And as I mentioned a moment ago, we didn’t own the
products, so you don’t see C-Change on them and you can embed within our platforms
your own messages because the other key part of this campaign that we learned from
our research is people couldn’t deal with big steps. They could deal with the smaller
steps along the way, so I just want to give you an example about steps because it
relates to the data this morning. So I’m now simultaneously because I’ve reached the
age of at risk behavior, I suddenly realized I need to undo everything I’ve done for the
last 65 years, so I’m simultaneously working with my primary care doc, a chiropractor, a
massage therapist and a personal trainer, so my doc looked at my weight and said you
need to lose 40 pounds. Then these other people put me on all these machines and
basically came up with a number that said you need to lose 37.9 pounds, so from a data
point we got very precise about what I need to do but at the end of the day it’s the same
thing I have to do. So I worry a little bit when we talk about all the data that’s available
and the precision. I’m not sure the precision always takes us where we wanna go. In
my case, I don’t wanna go there anyway. So we wound up having a very excellent
launch. We launched this thing publicly. We got a lot of media attention and Brad was
one of the people along with others from ACS, Prevent Cancer Foundation, Legacy and
others who all sat in a studio all day long taking media calls from around the country so
that we could get live coverage of this. It was a super launch. And along the way we
found that a lot of our members picked up those common messages and did some
interesting things with them – really interesting things, including how they incorporated
them into their websites, some of them included them in their tchotchkes. I understand
that in Iowa there’s several thousand frisbees running around with our platform on them,
etc., but a lot of creativity and that’s my point. So to be honest, and I’m gonna be very
direct and honest now, we paid most of the attention in our work to getting good
platforms in place. We did all the good science, all the good research, put all the things
together. At the end of the day, where we missed the mark was on the point Brad or
somebody made this morning; it was at the point of touch. It was in the uptake area.
So most of the early adopters of this work were the people who worked on it within C10
Change and to not use a pejorative term or to use a pejorative term not pejoratively,
they were the usual suspects, the people you would expect to pick these things up.
Much less so among the rest of our members, and to be really honest with you, I think
at the end of the day we probably had about 20 to 25 percent of our members picked up
the messages in some form or the other. And that’s because in part, our plans for
uptake weren’t addressed in the same way strategically that we should have addressed
them the same way we addressed the strategy of developing the messages and they
were too limited in their thinking, too short in our work, in our execution. So these
lessons have heavily influenced the way we’re thinking about what we do now. So now
our members start looking at us and one of the things we’ve looked at with regard to
prevention is that especially in the health reform debate prevention got a lot of attention
and it didn’t get negative attention. It was a lot—pretty much bipartisan support for
prevention, but the real question that we have as an organization is if we stop today and
look into the future and ask the question how will we move 300 million people off a
mindset that is acute care oriented and into one that is prevention and wellness
oriented, that question is really hard to address and it means we can’t take a short term
view of the world, so our current effort which is looking out 10 years, we’re talking about
10 years of development starts again with platform development. You saw our platform
earlier. If somebody—if any of you have any question of what do we mean when CChange says it stands behind prevention, we have a platform which I showed you on
the earlier slide. You can find it on our website, tells you exactly what we mean when
we talk about prevention. We are working on messaging development, just now starting
into some messaging development work, but we have looked at the way we’re gonna
handle and work through our members, and one of the things we wanna do is start with
ourselves and so this graph. Oops. Right idea, wrong button. One more. All right.
This is designed to say we are going to do a very different effort at organizing our 150
members. The concept to me behind C-Change is not that we balkanize into prevention
or values or work force or HIPAA or the comprehensive cancer control movement, those
are part of our initiatives, not to balkanize it. At the end of the day, we have a group
working on prevention, but at the end of the day, we want the other 140 organizations
that are not working on prevention to stand behind our messages and voice them with
us so that we have the power of three sectors working together. If we fail to get three
sectors working together in all of our efforts in communications, we aren’t going to
accomplish that magnitude of that shift that has to happen to get us from an acute care
to a wellness mindset. So starting with ourselves and thinking about ourselves, we
started asking ourselves what can we ask each sector organization in our group to do
and we began talking about how grants and advocacy work, where are you speaking
about prevention, for example, in your advocacy work, what kind of grants are you
making, etc. I got the five minute hook here. So we wanna—so thinking about that,
we’re trying to design pieces of this work to show that it’s relevant to all of our members
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so that every member can see a place for them in voicing prevention, even if prevention
is not even a part of their mission, but it should be something they care about. So the
next question out is to build it out from there then to other C-Change networks. Our
members speak to a lot of people out there so let's get them to speak to those people
and then let’s reach beyond our members to the larger community. I made this joke a
number of times. How many of you all know Dileep Bal from the tobacco world? A lot
of you? Okay. I was at a conference and Dileep Bal happened to be in the front so I
picked on him. I said the problem is Dileep Bal knows a lot about tobacco, he knows a
lot about what we should be doing in the tobacco world but Britney Spears is gonna
reach more people tonight than he has in his entire career and that’s where we are with
this issue. I’m not saying by the way we’re looking for Britney Spears to be our
spokesperson, but my point is we have to start getting the people who reach a lot of
people in order to be—do this or to use the points that were made this morning by
Daniel, we need to start using the mechanisms which reach a lot of people which we
typically don’t reach and figure out how to do that. We also want to campaign and
campaign means something completely different than it did when I started my career.
The technology that will be successful for us six months from now was invented last
night over a beer in somebody’s garage. It’s changing that fast for us, so when we talk
about campaigning now we’re not talking about PSA campaigns like we used to. We’re
talking about a different kind of way to get to a lot of different channels to get to a lot of
different people. And, of course, we want to advocate for the federal government in
particular to do its part in this, so I have four quick short parting shots here. One is
short term thinking is in in this country. Most of us are thinking about the next budget
cycle, the next election, the next board meeting. What we’re talking about I hope in this
room is not short term thinking and short term change, and I’m pleased to see your
blueprint is looking out trying to look out a long ways. We’ve gotta get off this short term
thinking model. Second is are we capable of making a sufficient investment to yield
meaningful results and when I say that are we constitutionally, philosophically,
financially prepared to do that as a nation. Great example, the Affordable Care Act has
the prevention fund in it, right? Supposed to fund a lot of prevention work. There was
no argument about prevention during the debate around health reform but suddenly
because it’s part of the ACA, the prevention fund is undersold almost every day. Is that
taking advantage of what we think we know needs to be done? The government needs
to do its part. We need to help the government do its part. All three sectors have to be
engaged in change. I said that a moment ago, but that also means we have to pay
attention to why should the three sectors get engaged in this and then lastly, I think we
are at a place and it’s been said today already and I’ll close with this, the juxtaposition of
science, science communications and the heart. At the end of the day, I’ve reached
that age where a lot of my friends are entering those at risk ages, a lot of my friends are
getting cancer and other chronic diseases, etc. They’re not interested in the science,
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they’re not interested in this meeting, they’re not really interested in any of us and what
we do professionally. We’re trying to make a decision as was just said earlier about
what to do next in their life. What we have to figure out is how to take the concrete stuff
that we have and put it in their hands at the time that they need to make those decisions
so that they make the right decisions along the way. Thank you for your time.
Thank you. So we’ll do a brief mic swap here. Our next speaker is Claudia Parvanta.
She is the Chair of the Department of Behavioral and Social Sciences at the University
of the Sciences in Philadelphia. Her research examines effective communication in
public health and health care settings and before joining US Sciences in 2005 she led
the division of health communication at the Centers for Disease Control and Prevention,
and almost there. Okay. Yes, I will. I’m gonna do your slideshow. It’s all about
communication.
I am kind of worried that the sound’s not going to work, so I’m gonna ask all of you, I
want you to go (sings Mission Impossible theme song). And if you know what comes
next, just keep going here. Okay, your assignment—so I’m not even going to bother
playing this thing. Your assignment should you choose to accept is you’re gonna learn
what boomers and Gen X and Millennials are saying about sun, tans, sunscreen,
tanning, skin tags, skin cancer, whatever. You’re gonna find out all that information.
That’s part of your assignment. Then you’re gonna design a digital brochure that’s
culturally appropriate for these different audiences and do you need to separate the
men from the women? I’m not sure. You need it in10 different languages. Oh, you
need a mobile app for an Android. You need a website. Did I mention a video? I want
you to get it on Facebook, monitor the Twitter feed and Facebook likes, disseminate it
through appropriate network channels. Oh, you have six weeks and less than $50,000.
(Sings theme song again). Okay, this is where crowd sourcing might be able to help
you make what is impossible possible. It might also give you better results. It should
take you less time and it should do it at a lower cost. Now I have to present myself to
you as a curator and as an anthropologist I just love hearing that term becoming so
jargony now. I am a curator of this information. I have no vested interest in it, but I will
be talking about some agencies that I sort of found along the way as I was doing some
research on this for this talk. So what is crowd sourcing? Let’s ask the audience as I
just asked you to help me with that song. Crowd sourcing is taking a function that was
once performed by employees and outsourcing it to an undefined and generally large
network of people in the form of an open call. This was first written this way by Howe
and it was published in Wired magazine in 2006 and it’s had lots of modifications over
time. A lot of you are already doing it with the open call competitions that the
government has allowed. There’s a really good—I really want to point your attention to
this report on the federal prize authority. It’s very well written and it has some great
case studies in it. Some of the benefits of open call competitions for everybody is that
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there’s no strict terms of reference, there’s a relatively low risk to reward ratio, it reaches
beyond the usual suspects and it brings in new thinking and added discipline or out of
the box perspectives. So some of the early adopters in HHS and you know who you are
include NCI which has done this Dory 2.0. Smart is an app, My Cancer Genome.
Someone was talking about should be easier to find clinical trials. You already have
these systems up and running and the last little video down at the bottom here which
I’m showing you is actually coming from CDC. It happens to be for pool safety and
these are the pool water police and it’s an adorable video and it’d be really nice if they
had more than five entries and more than 35 people had seen that video at this point.
So what I want you to be thinking about is with the open call challenge, are you getting
the number of entries that you want, are you getting the range of work that you want,
are you pleased with the quality of the creative. I’m not answering that. I want you to
think about it and let’s think a little bit more about how the private sector is using crowd
sourcing to do what they call co-creation. Co-creation is the act of involving consumers
directly and in some cases repeatedly in the product creation or innovation process and
I’m getting that quote from Doug Williams who works for Forrester Research. By the
way, Forrester Research sells their information for about $499 a white paper, so if you
want to know if information still can be sold, it sure can. Luckily I had some friends in
the government who could get that for me. Examples of crowd sourcing, as you know,
Wikipedia and Linux which is a online operating system. These represent voluntary
crowd sourcing where the people are doing a lot of work on there for their own reasons
but they’re not being paid to do it and a lot of what we know about crowd sourcing
comes from studying who’s been contributing. And what have we learned? Well
Nielsen who’s not the same as Nielsen ratings but a Danish usability guru. In 2006 did
a lot of analysis of who was contributing to Wikipedia, who was posting to blogs. He
came up with this 1990 rule which has been—everywhere you look you’re gonna see
this rule. Some people challenge it, but for the most part it stays. Hint – it’s just the
same as the Pareto Principle. Any of these things that tell you 80 percent of what you
get’s gonna come from the 20 percent who really care about it, whether it’s your
customers or it’s going to be who contributes to online stuff and what you’ll see is about
1 percent of the people who go to a website for any purpose are actually gonna be
creative on it, another about 9 percent are gonna take that stuff and do something with it
and share it enthusiastically and the other 90 percent are called lurkers and I’ve even
seen people with T-shirts that say lurker on it proudly. Okay. So they like to look and
they like to share it, but they don’t necessarily do much with it. What motivates people
to co-create for you? I’m gonna give you the new fours, not four Ps, it’s four Fs. It’s
fun, fame, fortune and the technical term is fulfillment but I like feels good. All right, so
those are the four Fs. How are you gonna make those rules work for you? The 1
percent are your creative consumers. They have creativity and skills and they are most
motivated by fame and fortune. They’ve got good skills. They can get paid to do it and
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they want to be known for doing something really great or they want to get some money
to do it. Nine percent about, these numbers are not cast in stone, nine percent are your
enthusiasts. They like to refine the ideas, they like to spread them around and they
seem to be most motivated by something that’s fun and interesting for them or that it
feels good. They feel like they’re doing something for a cause that they care about.
The other 90 percent who we’ve called lurkers, they’re the people who validate and
ultimately will buy to use social marketing term or use the resulting products or services
that you’re developing. They’re the people who want their problems solved. For the
most part, they are your target audience. Now let’s talk a little bit about where crowd
sourcing can enhance and/or speed up your health communication; in your traditional
formative research tasks such as audience and consumer research, in materials
development and testing and in dissemination. Let me take you through this a little.
Here’s a typical tailoring problem. We’re gonna send out—this is actually from the
project that I worked on at Thomas Jefferson University—we’re gonna send out a
tailored message page to you. This happens to be one for women trying to encourage
you to come in for colorectal cancer screening. But I have a matrix and this is only half
of it that has about 20 factors that I want to tailor on and inside each of those little boxes
I need to have a very specific message. Well I can tell you, I tried sitting there trying to
come up with a very specific message to go in each of those boxes. A lot of them
ended up looking the same. This would be the kind of thing I would like to crowd source
and see what I can find out. People today were talking about the funnel. I’m so glad
that people already introduced the funnel to you because it’s something that’s used all
the time in business and I say in public health we have like the bucket. We just pour
everything in the top and everything comes out on the bottom. We don’t seem to weed
out that well, but in business there is this funnel and the idea is that as you move
along—I’m so afraid to push the laser pointer because I’m afraid it will advance my
slides. Let’s see. Okay. We start at this end where we’re developing our ideas. We
then refine towards our concepts so we then come out with our products, our specific
messages and then we’re out communicating about them. What I want you to be
thinking about is which kind of audience do you need depends on which stage you’re at
in this process. Eric Vernette who teaches marketing at Toulouse University said
representative participants give representative answers; creative participants give
creative answers. Do I need people who represent what I’m trying to work with? Do I
need that target audience or do I need creatives? I don’t want to be throwing something
out to the world of representatives if what I really need is creatives to be solving the
problem. So, what you really want to be thinking about is engaging the broadest
audience possible while you’re gathering your ideas, then moving it into a concept
stage, then having it refined and played with and spread around and then disseminating
it out and I’ll go ahead and say you need 100 percent to do that, maybe you can do it
with less. How do you find your 90 percents? Where are they? All right. Your first 90
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percent is your big crowd. The buzz word is marketing research online communities.
These are usually password protected websites where a specific group of people are
recruited to take part in daily, weekly or monthly research activities about a shared topic
of interest. What’s important about this is it’s not a survey, it’s not a focus group, but
you have to treat the data qualitatively. However, hold on a second—before I go to that
slide—however, you will be working with people over time. You can set this up and you
can be engaging anywhere from 50 to 300 people on a topic. Where do you find your
90 percent to put them into this? Well, you can do it by the demographics, and I know
you can’t really see this slide very well, but it’s basically showing you where various
audience segments broken out by age or gender go online to find things. You can work
with communities, and I told Matt I’d be showing some of his stuff as I went along, Matt
Kreuter, so you might want to go to—this is a wonderful site. Everything they do is
wonderful, where they’ve got together a bunch of survivor stories and you might want to
go to those communities and see who’s accessing them. That’s a wonderful community
who you might want to pull in. They might actually be your enthusiasts. They might
want to work on stuff further or you convert your other social media assets into this 90
percent. And again, I was saying there’s a whole big recipe of how do that on Forrester
and Galen will be happy to share it all with you because now he’s got that report. Or
you can outsource this little job. You can outsource it to any vendor. This one happens
to be Plugged In, but there are lots of them that will do this for you. The typical cost for
having an unlimited number of marketing research online communities now is down to
about $5,000 a month. Think about how much it costs to do a couple of focus groups,
so just keep this in mind. All right, where are you gonna find your enthusiasts?
Similarly, you can go to different user communities, so, for example, who’s using—you
say MIYO? Who’s using MIYO? which is again coming out of the Missouri group where
you can take and match up all these wonderful images with your messages and
produce beautifully tailored materials for your very specific audiences coming to a
clinical practice or a community setting. Who’s really using that? Those would be your
professional users who might be interested in looking—
END.
disktwo00002
—you’re doing. Or again, go to patients and families who are going and accessing
these stories from the survival series. Or, go look at health message boards and you’ll
see the numbers, and this is what’s exciting about it. The numbers are not like five or
10. You’re getting thousands of people that are going to go to a health message board
and they’re discussing a certain topic. That’s a group of people that you can invite to be
into a marketing research online community. Where do you find the creative, that 1
percent? Well, option one is working with what are called curated crowds. Curated
crowds are organized by agencies and some of the agencies that I talked to as I was
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preparing for this presentation include a group like Eyeka which actually is over in
Europe. Most of my discussions were with—I love this—a first year Ph.D. student at La
Sorbonne named Yannig Roth who also works at Eyeka and he gave me so much
information. He’s such a great kid. Genius rocket or 99 designs, but there’s actually I
hate to say hundreds of agencies out there now who could do this for you. Option two
is with your open contest and this is the government platform gotchallenged.gov that a
lot of you have been trying to use already. The only thing that I’ll point out is that if you
do get successful at this, finding your best work can be like finding a needle in a
haystack. It could take you a lot of time. So this might not be preferable to putting it
through an agency that will help you with trying to find the creative to put it together.
Last thing I’m gonna talk about, and I’m not talking about crowd funding. You can all
look up kick start on your own, but crowd labor, and we’ve had some references to
Amazon Turk earlier. The kinds of things that people are putting out for crowd labor
include language translation and simplification, how do you carry all those
conversations on social media, sentiment analysis and Daniel mentioned something
about sentiment analysis. I’m gonna say something about that in a second. Identifying
and coding content and staffing call centers, so here’s an example of sentiment
analysis; when you look and you see that Twitter launches its own political barometer to
track U.S. presidential elections what you know or should know is that sentiment
analysis is being done through crowd labor, so there’s hundreds of people that are
reading all these tweets and they’re saying well, they’re in favor of him, or they’re in
favor of him or they don’t like this, they don’t like that, but you can train those people to
do much more sophisticated coding for you. This is just—I want to tell you. Here’s
Amazon Turk. Amazon’s Mechanical Turk. How many of you knew why it had that
name? I have to tell you because it’s the greatest story. Amazon Mechanical Turk was
called that because in the 18th century this guy went around dressed up—or he went
around and he said I have a—he had a robot who could play chess and he dressed him
up like a Turk at the time, but inside the box was a Chessmaster, so it was artificial
artificial intelligence and that is why Amazon calls this Mechanical Turk because it’s
really people who do all the work for you. Crowd flower is another major crowd sourcing
site for crowd labor. As they say, the world’s largest workhorse. It’s kind of mindblowing when you can see what can be done. It’s also a little bit discouraging if you
spend a lot of your life trying to make things really, really good and learning all the skills
to see oh my God, they’re almost a dime a dozen, not quite a dime a dozen. It’s more
like I can get five cents for coding this thing. This is a typical call board with qualification
tests at Mechanical Turk and you can see that—well, you probably can’t see, but there’s
a lot of people who can qualify for very specific tasks and you can set up tests to test
whether they can do the job for you or not and then it goes out and the work gets done
and it’s rather miraculous. So summing up, crowd sourcing can speed up and enhance
your health communication, but you want to use the right crowds to source your work.
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You want to use the 1 percent creative, your 9 percent enthusiasts and your 90 percent
intended beneficiaries for the right task at the right time. You need to motivate your
crowds with fun, fame, fortune or feeling good. The creative tend to be the ones who
are most motivated by the money and the fame and the others a little bit more by the
fun and the feeling good. You might want to consider using crowd labor to manage your
social media and other large scale tasks, and I’m gonna suggest that we stay in control
of this process and we don’t just let it all out of our hands by just putting open calls up in
general for anything. I think we want to take a little bit more care in what you want to
put out for just an open call if what you want is creative versus some of the other areas,
and I’m just speaking about the health communication side of it. I think for the
technological stuff it looks like the hits are more rapid and there’s more happening.
Here’s some of my key references and helpers, and I wanna thank you very much.
Thank you. Thank you very much, Claudia. I couldn’t help but wonder as I heard the
Mission Impossible theme how many of us thought Peter Graves, how many of us
thought Tom Cruise and I bet you could guess who thought what. Okay, coming up
next and we couldn’t be in Washington D.C. without talking about advocacy, David
Pugach is the American Cancer Society Cancer Action Network Director for Federal
Relations and he’s responsible for lobbying on budget and appropriation issues. Prior
to joining ACSCAN, David served as the Deputy Director of the National Cancer Center
Institute Office of Government and Congressional Relations, so as he approaches the
podium, I will get this to come full screen. Okay, David, thank you.
All right, thanks, Chuck. Good morning, everybody. So as Chuck mentioned, I’m a
lobbyist for the American Cancer Society Cancer Action Network and one of the things I
always think about when I look at the people I’m seated with on a panel is, you know,
why am I here, why did they ask me to participate and I think the reason for my role
today is I’m the end user. I’m the person who takes a lot of the data that’s developed,
the information that’s put together and along with my colleagues we put it to use in our
policy development and in our advocacy efforts, so just to take a step back, what’s the
difference between the American Cancer Society and ACSCAN? So as you’re all very
well aware, the American Cancer Society supports and conducts its own research,
provides education as well as patient services, operates through our national office as
well as local presence in every state. Simply put, it’s the largest voluntary health
organization in the United States. ACS has a rich history of supporting research,
supported 46 Nobel laureates at some point in their career. The American Cancer
Society Cancer Action Network, we are a leading cancer advocacy organization that
works to make cancer a top national priority at all levels of government and really what
we’re focusing on as policy development legislation at the state level, local level, as well
as federally through Congress and the White House. Put another way, ACSCAN really
tries to utilize the data and information developed by our colleagues at the American
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Cancer Society and really one of the things that you’ll hear me reference throughout my
slides is cancer research because that is one of our top priorities. And so just to really
provide a frame of reference, in the near 100 year history of the American Cancer
Society it’s funded about $3.5 billion on cancer research which is obviously tremendous
for a non-profit organization, however by comparison, the NIH as a whole spends about
$5.5 billion just this year alone, so really it’s economies of scale what a non-profit can
do versus the federal government with regard to research. The same certainly holds
true for cancer prevention and control. So what are we looking at? We really are
focusing on translating science into action for advocacy as this panel is so aptly named,
how do my colleagues and I utilize what NCI, CDC and certainly the American Cancer
Society is producing. As I mentioned, it’s through our work on funding for cancer
research. We partner with coalitions, we help run One Voice Against Cancer, United for
Medical Research which develops a lot of the economic content that we’re currently
using in our efforts to support cancer research funding, but we’re also working to
develop materials regarding implementation of the Affordable Care Act, certainly as
people spoke about earlier today, quality of life legislation which is really focusing on
improving the comfort and wellbeing of cancer patients and their families from the point
of diagnosis through treatment, chronic care, survivorship and end of life and certainly
tobacco control is a huge part of what we’re doing at the federal level. On the state and
local level, tobacco control is a priority. That’s through promoting smoke free laws and
increasing state and local tobacco taxes, indoor tanning, obesity, nutrition and physical
activity, Medicaid coverage and a host of other things, including funding for breast and
cervical cancer screenings. We have a publication that’s about 10 years old. The latest
annual version was just released at the National Conference of State Legislators just
two weeks ago. It’s called How Do You Measure Up and this rates every state for
implementing various benchmarks for cancer control as well as where they rate on
various legislative initiatives ranging from health insurance mandates through clean
indoor air laws. So again, how do we communicate with policymakers? Well, we
certainly look to utilize all the information we gather from all of you into what we’re
doing. This gets utilized in a number of ways in our direct lobbying activities through the
work that our volunteers do as well as in our media outreach efforts both in terms of the
earned media opportunities that we look for as well as in our advertising and certainly in
how we communicate with members of Congress as well at the state level. So just a
quick example of our advertising on research, this is an ad that we’ve run in various
iterations over the last couple of years trying to convey a very simple message on the
importance of sustained funding for cancer research and certainly we now are actually
running advertising around our quality of life initiative as well to make the case on the
efforts through better communication and empowered decision making that you can
certainly improve the quality of life and wellbeing of patients and cancer survivors. So
how do we mobilize our volunteers? Well, we do it through a number of ways. It’s local
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activities that we do throughout the country, primarily during congressional recess
periods such as the month of August right now. It’s through timely action alerts for our
volunteers that take the form of office drop bys, phone calls, emails, as well as training
that we do also on an annual basis both here in Washington and across the country,
and then we bring volunteers in throughout the year for lobby days both through the
coalitions we work with as well as our own ACSCAN lobby day which is in fact coming
up in a couple of weeks. One thing that we worked on last year was throughout the
month of September doing a series of events. I think we did probably all told 200, 250
across the country. This is a picture from one event we did at the NIH clinical center
really again focusing on cancer patients, survivors, the benefits of cancer research.
Here you have one of our leaders of the American Cancer Society, Cancer Action at
Work along with a patient who told her stories and then a couple of intramural
researchers and leaders from the National Cancer Institute participated in this event.
And again, events like this are great and it’s part of our core strategy which is you
involve the experts, you involve the patients to share their stories, you bring in either
members of congress and/or their staff as well as you attract media to attend as well
and it really, again, is part of a steady effort to raise—increase public awareness on,
you know, these issues, whether it be cancer research or any other, you know, priority
area for us. You have the American Cancer Society Cancer Action Network lobby day
where we bring in about 700 staff and volunteers from across the country. It involves
training our volunteers and most importantly making their presence felt on Capitol Hill,
having them meet with their members of congress, letting them know what their
priorities are, and certainly a big part of what we do is bringing in ACS funded
researchers who in many instances are NIH and NCI funded researchers to speak with
our volunteers about their work. Training the volunteers is a very big part of what we
do. We try and bring in folks from NCI. We had Doug Lowy last year, Lee Helman the
year before. Otis Brawley, Chief Medical Officer for ACS, he speaks to our volunteers I
think every year on progress and the fight against cancer. We utilize data in just about
everything we do. ACS facts and figures is incorporated, the primary statistics and
probably all of our materials and certainly as was alluded to I think in a number of
presentations this morning, what we’re doing on prevention and really that, to me, is one
of the primary purposes of conferences like this which is how do we do more of and do
a better job of implementing what we already know works. We all know and it’s been
referenced already today that about half of all cancer deaths could be averted by simply
implementing what we already know through tobacco, better nutrition, physical activity
and certainly cancer screening, and the Prevention and Public Health Fund as Tom
referenced before is something that’s under attack; that programs aren’t really
controversial, it’s the source of the money that people are going after and so what we
just released back in July is a report that highlights how the fund is being used that
really I think this report for those who haven’t seen it yet contains I think 25 stories from
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across the country of programs that are being supported with prevention fund money as
well as people, patients who have benefited. It’s actually not really a cancer specific
report. I would say there are probably as many diabetes and heart disease stories here
and the benefits are really related to—across the spectrum of chronic diseases. I’d
encourage people to take a look at it and certainly I’m sure our office could help provide
hard copies to people who are interested as well. One of the things that the current
political and economic climate is really forcing us to do is focus I would say almost as
much on the economic impact of federal funding as it is on the human benefits. And so
as I mentioned before, we’re working with coalition partners, primarily through one
coalition, in this instance United for Medical Research to try and develop materials and
data points on really the short term economic value of funding for research, and I’ll tell
you all that we looked to do something not through this coalition but just as ACSCAN
something comparable on the benefits of preventing funding and the CDC cancer
control dollars and the reality is just it’s a matter of economies of scale. You simply—if
you were to do the same type of analysis based on CDC money, the data would be
quite unimpressive and so you can’t really make the same short term economic
arguments and really expect it to carry any real weight, but nonetheless, it’s really been
a very useful exercise for us on the research side. But at the end of the day I think most
people what they want to know and what separates us even in a time when the
economic arguments are quite compelling are what the real advances are. The
advances in cancer treatment matter more than the economics because you could
make the same case regarding jobs and economic growth for the building of a ship, the
building of a highway or a bridge, but here it’s the value, the benefit to people’s lives
and public health, and so it’s highlighting, you know, the constant evolution, the
advances in practice and treatment that I think are ultimately most compelling. Clearly
there’s been a long-term trajectory here that’s very, very challenging, very troubling and
certainly makes it problematic for those people actually doing the work and that is, as
you see, that despite I would say somewhat stable funding, no noteworthy increases
since the end of the doubling of the NIH budget we’ve continuously fallen behind
inflation and that means those of you who are funded by NIH could attest to this far
better than I can which is you’re doing more with less or probably now you’re at a point
you’re doing less with less I would say, but the good news is that in a time when there is
great emphasis on cutting spending, we did—and those of you who’ve probably seen
me give similar talks over the last year or so have seen these numbers. We haven’t
done an update on the polling since the spring of 2011, but I’ll tell you that this was a
sample of I think about a thousand people from across the political spectrum and just
strong support for spending for cancer research and prevention. Nobody wants to see
the federal budget balanced on the backs of, you know, or at the expense of these
programs. Really though, the challenge that we face right now is that there is
consensus on reigning in the federal budget. I think we all saw what happened last
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summer when there were protracted negotiations on the federal deficit and we’re
actually gonna be entering a similar time frame this coming winter. In February or
March of 2013, when there was the negotiation on the debt limit this past—a year ago
we saw the federal deficit limit increase by about $2 trillion. Well, we’re set to reach that
next limit in the federal debt in February or March and so you’re likely to see a whole
host of negotiations around spending and taxes all over again, but I think that’s really
gonna force the hand on a final resolution. So to put it in perspective, we have a $3
trillion federal budget give or take a few billion, I suppose. The NIH is a very small
fraction of that, so if you cut federal spending, you know, you’re really not gonna impact
the bigger picture. The real challenge is that the NIH is a very big piece of a relatively
small pie that it gets funded out of, and the CDC to a lesser extent the same is true. But
we’re working very hard to build support through coalitions, to make sure that there is I
would say science-based messaging that’s really based on consistent evidence and that
we’re working to make sure that there’s a steady drumbeat here of support. I’ll note, I
thought it was actually—when Claudia was talking about crowd sourcing and what you
get through the coalition One Voice Against Cancer we tried an experiment this year.
We had an online video contest to try and see what type of, you know, powerful
messages the general public could provide us to make the case for cancer research
and prevention funding and we promoted this contest, we sent it out to public health
schools, to film schools, we advertised it on the Web, we had our coalition partners
promoting it and after about three months we got a whopping 12 video submissions and
probably, you know, the quality varied greatly, so still very much a work in progress to
figure out how to draw in the general public to participate in these efforts. So I’m gonna
stop there. I know that there will be questions afterwards, so thank you all.
Okay, so our final presentation is from David Ahern. He is the director of the Health
Information Technology Resource Center based at the Brigham & Women’s Hospital in
Boston which provides technical assistance and guidance to leverage the near term
value of health information technology for the Aligning Forces for Quality Program of the
Robert Wood Johnson Foundation.
Thank you, Chuck. Thank you very much. Mercifully, I’m not gonna use slides, and
Chuck tells me I have about 12 minutes. I’m only gonna use 10 because I know you
have questions that you want to ask the panelists and I want you to be able to do that,
plus, I also know I’m in the enviable position of between you and lunch, so on that note,
what I’m gonna do is sort of talk to you about the context for which I heard these
presentations sort of—talk about the highlights, maybe the key take home messages
from my view in a perspective from the field, as the work that I do with the Robert Wood
Johnson Foundation, Aligning Forces for Quality. So when Brad asked me to stand in
as repertoire and gave me the title of the panel, how could I say no? Aligning Forces for
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Impact. And I have spent the last six years of my work with the Aligning Forces for
Quality Program of the Robert Wood Johnson Foundation, which if you don’t know is 16
geographically defined alliances throughout the United States that have been brought
together, funded through the foundation, stakeholder alliances to improve healthcare
quality in those communities. And an earlier speaker had talked about, you know,
politics being local and data being local. One of the principals of AF for Q or Aligning
Forces for Quality is that health care is local. So if a health care that’s delivered in
Memphis, one of our alliances, is not at all like the health care that’s delivered in
metropolitan Boston or delivered in Detroit or Maine and many of the other alliances we
work with. So I was pleased to have the opportunity. There were two take home points
from my view that I think are really important as I look at it from the perspective of AF for
Q work and that is really what are we talking about needing to do in health care, and I
think there were two things that we need to do and we need to leverage communication
science and the evidence to do those two things. One is we do need to improve quality.
We don’t have the best quality health care system in the world. You all know that. You
can look at the evidence national or internationally rather. We do not rank in the highest
developed countries in terms of health care quality across a whole range of metrics.
That’s number one. Number two, we have to reduce the incremental unit cost of health
care as well. We have to do them both. We can’t just one without the other. That is
the imperative we face right now. Farzad talked about this quiet revolution in health
care reform in terms of the delivery of care and how it’s paid for. If he was here I would
say I agree with the word revolution. I’m not so sure it’s a quiet one. I can speak from
the integrated health system point of view. It’s a messy, often chaotic, often painful
experience to change the way we deliver care and the way in which it’s being paid for.
Those are huge sea changes in an industry which is one of the largest in our economy,
so we’re in a very difficult time, a very transformational time but within transformation of
health care there are enormous opportunities, and I think Farzad certainly as a close,
dear colleague of mine, the investment of our treasure to improve the infrastructure for
health care delivery was essential. Are these systems ready for primetime? Not really.
They’re not that effective when you really get down to how a provider delivers care and
how a patient receives that care and an encounter clinically, but it’s the best we had at
the time, we needed to make that investment and as we know about technology for all
the technologists in the room as technology evolves. It’s never about the technology,
Brad. It’s always about behavior, behavior of patients and providers and the behavior of
using technology and as technology evolves I think we’ll improve. And we can achieve
improvements in quality and reduced cost using technology. Meaningful use is a very
big part of this and I love that concept. I think about it all the time. It’s what I do all the
day, meaningful use all the time. It’s about making sure it isn’t technology. It’s the
results of a use of technology that it can improve quality and reduce costs. So he talked
about the things that ONC has done and what we’ve done with these investments. We
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are in an experimental period. We need to continue to monitor and we absolutely need
to support research and evaluation. That is absolutely critical because as one of my
colleagues once said, we were sitting around the room one day when a projects we
were implementing actually wasn’t working very well and he just paused and looked up
and said I know you’re recording this, SH.. happens in healthcare. You know, just
nature of health care. Health care IT, magnify that by five times. If you know what
happened with health IT before the ONC investments, before meaningful use, there was
a huge failure rate for implementing technology infrastructure projects. We needed
consultation, we need support services, we sort of learned a lot from those early days of
failure, so we have to do research. And the unintended consequences of not doing
those evaluations are really potentially very grave, grave for the individuals involved, for
the patients involved and also grave for our—
Disktwo00003
……engine because we have to succeed in this. As I said, this is a huge investment of our
treasure and we need to have successful outcomes. So you all know the work of ONC and I
think Farzad just really touched upon it. I think he’s doing a really remarkable job and I applaud
the work.
I really enjoyed hearing Tom’s presentation and I did not know about the C-Change
Organization. I give you great credit for harnessing 150 organizations to come to the table and
to work together on a common platform and the idea of a common messaging platform. I love
that idea, the economy of scale there. And given what we’ve heard today about the sort of
confusion, almost the swamp of information we’re in that we need to have organizations like CChange sort of help us rationalize and harmonize perhaps the different messaging platforms
and models that we use. And I really admire the way you did your work as a scientist. You did
it in a systematic way, looked at sort of an evaluation approach, looked at where you made
errors and where you missed steps, and then improved the approach. That, to me, is the
scientific method and one that’s the way ultimately to get to the truth. So I really enjoyed your
presentation on that. I really liked the crowd sourcing talk. I love the way you presented it. I
do, am a devotee of social media and I do see the value proposition of harnessing the crowd
ultimately. It is sort of at an early stage, it’s nascent, so we need to also track to see what the
lessons learned are. And the question is do we ultimately get better quality in terms of the
content, the products, the programs that a crowd sourcing model produces. That’s something
we’re going to need to be carefully monitoring and the same thing with the use of social media.
We did a number of projects within the aligning forces for quality around the value proposition of
social media, a case study in Maine which I shared with Claudia and is available through the
Robert Wood Johnson Foundation website where we brought an alliance to the point where
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they could collectively leverage social media and I think Maine, as an example, as one of our
alliances has done a remarkably good job of using social media. Their Facebook and Twitter
presence is specifically to actually build community in the State of Maine, and they’re just doing
remarkable work there and I’m very impressed with that.
I think there’s a need to—I love the Fun, Fame, Fortune and Fulfillment, the four F’s as
well because I always say with healthcare we are just notoriously bad at customer
experience and satisfaction. When was the last time—I always ask this of audiences I
speak to—when was the last time you had a delightful experience with healthcare
where it was really delightful; it wasn’t just okay, you know, I didn’t die, that was good,
but when it was really delightful? I mean we need to have delight in our engagements
with our healthcare system in the future. Otherwise we’re not going to get patients
involved and engaged as we ultimately want. And I think as a researcher, too, we need
to have a little more fun in what we do. So really tracking the videogame industry
movement and the use of videogame technology as well and getting people more
engaged whether it’s providers or patients. And, David, I applaud your support for
research. As a scientist and a research, that’s very self serving. But you’re right, we’ve
been on a downward trajectory in terms of investments and in terms of support. It’s
gotten increasingly—for those of you that write grants, you know how difficult it is to get
grants funded. And I talk about fickle reviewers and I talk about lack of clarity of what
the regs and rules are, but the fact of the matter is there’s just a limited pot of resources,
right. We’re in a constrained environment economically and so that’s just the harsh
reality. But back to my earlier point. If we don’t do the science, we will be misguided in
our efforts to change healthcare and we are in a huge experiment right now with our
healthcare system and all of us are going to be subject to the results of that. So I urge
you all as patients ultimately, consumers certainly, to play a role in the future healthcare
system in an active way whether it’s becoming more empowered as a patient or
whether it’s working collaboratively if you’re in the healthcare space because we need
to team model. We need it in the primary care setting, we need it in the hospital setting,
and we need it in the community as well. So I really want to give a round of applause to
our panelists and I think we can then open it up for Q&A.
Thank you, David.
(Applause).
Thank you very much. I hope some of you will make your way to the microphones. We have
generous time for lunch so don’t let that stop you. Don’t be afraid to be the one that keeps
people from going to lunch. I see that look around the room. Okay, well obviously the panelists
will be around today so you can come up and speak to them individually, maybe take one to
lunch, I bet they would go. Do we want to come back at 2:15 and try and get back on time?
Okay, so we’ll see you back here at 2:15. Thank you, again, for your attention.
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