I had a consent to have my
to adhere to the consent form, talk videotaped, so I'll try
( laughter ) all right?
here. I know, for some of you, it's
kind of different groups here.
the Cancer Center. There's a group from
It's been really a pleasure getting to know a lot of you
over the years. Briefly about myself,
I'm from South Dakota.
1990 to 1999. I I did my training here.ut
Then I was on staff.
to western South Dakota. Then I relocated back
that's at, because that'll be one question, "Where are you
from, again?" I got involved in the
disparity project and ended up
a real pleasure to be here. coAnd I really want to thank's
Sarah, who's just been an absolutely wonderful partner
on this project.
up two hours of your time. I have enough material to take
I realize that at 1:00, you Weprobably need to startut
filtering out of here.
to speak a little too quickly, As we go through this, I tend
doesn't make sense. soI'm not going to go intong
too much detail on the cancer treatments.
We can talk about that later. But again, it's a pleasure
to be here. So we have a NIH funded
project. It's called
That's the informal name. The formal name is Enhancing
Participation In Clinical Trials
And if you go on the For Native Americans.
they'll look at you like, "What planet are you from?"
So, we'll tell you how, with the derivatives
of Walking Forward are. It's a product that basically
addresses cancer disparities
in western South Dakota. in the American Indians who live
project called CDRP, I'm going to describe this
a number of times. you're going to hear me say it
Research Partnership. ThaI'll discuss key elementsrity
of our program, and what are
I'll describe some new grants essentthat we now have.esults.
And then when we go into the
probably 90% of the reason that I'm here, is to see if anybody
wants to jump on board and
of interest. collaborate in mutual areas
comes up, where in the world So, the first question that
Of course, Madison, Wisconsin, are you from?
right there. is the center of the universe,
and put your cruise control on for about 12 hours, you'll
end up over where I live, which is what I like to call the
UW West Clinic, and you'll see
Some people don't like for me to say that, but the reality is
it's kind of UW West. As you get closer, Rapid City
is located in the Badlands. So this isn't Fargo,
North Dakota. If your image of the Dakotas
is the movie Fargo, this ain't
It's kind of mountainous. whIt's very nice.y.
Pardon my improper English, there.
We are serving the three
South Dakota, which is about Reservations of western
American Indians, anywheor Native Americans.0,000
I'll use those terms
We have Pine Ridge down here. inteRosebud.bly.
Eagle Butte or Cheyenne River.
geographically makes any sense, this little town called Sturgis,
you should have some familiarity
of people that visit there with that, because we get a lot
So what is CDRP? later in the year.
Rosemary Wong at the NCI. This The program, this istor.
a federally funded program. It was announced in 2001.
The genesis of this is, after I trained here, after I was on
staff, the chair here sent me an
want to check this out. This may be something that would
be of interest to the population
So we put in for this grant. that you serve."
sites to receive it. We were one of the first two
for institutions that are Tessentially new to NCI
clinical research.
that experience cancer It's to focus on populations
It's interesting that it was disparities.
radiation oncology centers. deThat's another story.to
You needed to have a dedicated
on, which is yours truly. PI And then part of this wasthat
a mentoring education program called telesynergy.
At one point that equipment was housed in this medical school
and has been subsequently relocated.
Then also a critical part of
program. this was a patient navigation
RFA when they were issued: So here are the goals of this
participation in cancer trials increase minority access to and
a radiation component; with those that have
of clinical and translational scientists studying cancer;
really to develop new institutions and their ability
to engage in long-term
obviously to look at the problem research efforts; and
CDRP, that's just a repeat of healthcare disparities.
The interesting thing about this of that slide.
was a little bit political, traditionally the NCI funds,
NCI designated cancer centers,
of that money would trickle. such as yourself, and some
traditionally the mechanism goes Anyway, on this slide,
and then some of that money tois funneled down to theis
communities.
relationship in that it was the community cancer centers
that put in for the grant and then they would partner with
an NCI designated cancer center.
is the indirect money comes Soto Rapid City.ns
And as you can imagine, there was a little bit of political
maneuvering that had to take place for that to happen.
The indirects went to us and
Sorry, we got the indirects then we pon this one.h the UW.
So we do provide, hopefully some benefit mutually.
These are the sites that
So each one of these received them.
with an academic center. institutions have a partner
didn't really make-- Geographic distance really
So we partnered with UW. It wasn't an issue.
We're working with a Here are some other sites.
down in Texas. Native American population
But each part of the country You can just read the list here.
population that suffered was working with a different
This is the NCI summary slide from of how this isties.
all supposed to work. Now the interesting thing
is this is a big experiment.
There have been a lot of growing This has not been done before.
And if anyone's interested in pthese slides, I have my cards.
up here.
available to anyone. I'll be glad to make these
of how this is going to happen. But If you've heard me speakture
before, I'm sorry, but you're going to have to look
at pictures of my family. That's just part of the gig
when I give talks.
I have four kids between So, this summer.
They all want to come back eight and about 14.
So if you want an idea of what to UW.
if you've ever been to dto the Colorado Plateau.on,
There's all these cool canyons
I'm just going to show you along the Colorado River.
If you get one of those, some of those pictures.
"tourist" on your forehead. you But that's okay.amp
( laughter )
to park that thing. IThat's my wifed
and four children.
too, but this year, Lashe had to hold off on it.,
We were thinking about
And so, we saw this little the cost of college.
to reduce the number device and thought we'd try
Just kidding. ( laughter )mily.
Actually, I about had a heart attack.
This just shoots them over the canyon.
It's about 1500 feet down.
I had these pains for a while. But they survived it.
We'll do these little intermittent commercials,.
all right, just to see
So, what is the issue? if you're awake.
that Native Americans, they have We know the data's out there
They also have a high instance a very high instance of cancer.
The reports of the nation just came out on cancer
a couple of weeks ago.
But this just shows, in this I encourage you to pull that.
age adjusted for mortality. This is per 100,000 patients.
It's 129 for all IHS, or Indian Health Service units
versus 165 for U.S., all races. You look at that and say it
looks like the cancer mortality is low.
Actually, in the northern plains
So there's a problem there. You're considered part of
the northern plains area, it goes from Montana,
as far west as Montana, and I think as far east as Illinois,
in that region, or a little further.
This is data from our own tumor registry.
We have about ten publications, either having published
or in press.
the project. These are two that describe
of presentation for Native Americans walking in thee
door that are locally advanced. Native American versus
non-Native, and we see there's
They're coming in with more advanced stages of disease..
So again, this is a map of the area that we service.
This is the population density. The population density
is higher on the Reservation. So we have the three
Reservations that we work with, as well as the urban population
in Rapid City.
a hypothesis for all this. So obviously, we need
this in 2001, one of the obvious So as we were talking about
And if you put western issues here is distance.
actually in Wisconsin, South Dakota, you put it,
about 30 cancer centers. you'd probably have
a huge geographic area. Could it be that distance
from the cancer center
Obviously, it's much more is complex than that.rs?
So one of the ideas was to use
that actually were derived from ithe University of Wisconsin,s
implement them out there in that
part of a clinical trial, to part of the country, often as
distance to the cancer center. at least address one issue of
This is the summary So tof what the grant does.rant.
We implement Phase II and III clinical trials.
Some of these terms may be new, and that's okay, I can talk
to you about them later.
radiation, where we can often shorten eight weeks of treatment
down into, in some cases, one day.
It's been used
Tomotherapy was invented here. for over a century.
modulated radiotherapy. Again, if that goes over your
head, that's okay.
way of delivering radiation. But it's a very sophisticated
with UW to shorten the overall We put together clinical trials
What I should've told you is a treatment time.
takes about two months. coSo not only is it a distanceon
from the Reservation to Rapid City, it's an issue
of you're dislodging them from their cultural roots
for almost two months.
these innovative technologies, So the idea was that if you use
in universities and themajor academic centers, orble
metropolitan, you would at least
treatment to them, preferably in provide state-of-the-art
the overall treatment time and a clinical trial, you've reduced
Obviously, it's much more at lecomplicated than that.ier.
We also have a lot of cooperative group trials that
are run on a national level at all cancer institutes.
And UW certainly participates in a lot of those trials,
as well.
treatment trials that we have. So there's about 80-85 cancer
part of this program, if it Psucceeded, was our patient
navigation program. And the patient navigation
program is designed to help navigate patients through the
complexity of their treatments. As part of that program, there's
a huge social science component.
the school of public health, And that's where CDH comes in,
we've been working with here. thThere's a genetic test thatat
we're doing that looks at,
Natives appear to be is there a genetic reason that
of therapeutic radiation more sensitive to the effects
So that's kind of the premise of this whole program.
We put it together. The partner institutions on
this, the NCI designated cancer centers, obviously UW.
We needed a second partner, and it's Mayo Clinic.
Judith Kaur is a
at Mayo. Native American oncologist
she has her own cancer program And then Linda Burhansstipanov,
She's been a key partner in Pine, Colorado.
I should say the real partners with us as well.
with on a daily basis, are the ones that we're working
We're the phantom partner, are the Reservations.
Just kidding. tI'm being videotaped, so.
I have to behave myself here. So results.
This is our patient navigation
And these are two of the navigators.
Actually three of the navigators
Dave, Kevin and Mary. And then our other navigators
live on the Reservation.
embedded in the community. These are people that are
they know the system quite well, They're Native American, and
our protocols through. which also helps us get
One is the navigation program Sthat exists at the cancers.
center. Their goal is to assist cancer
patients with completing
We do provide monetary treatment.
protocol. To date, we have "given out"
about $220,000 over five years. That's what it takes to get
these patients through, but it's about $1,000 per patient.
Then there is the community navigation program and
the other representatives.
Research Representatives. We caIt's based on a modelunity
on the Reservation. They're called CHRs, Community
Healthcare Representatives. They're out there to promote
education, outreach, networking.
interaction with the cancer patients when they come back.
Their objectives, we have a Cancer 101 module that they
administer into the community.
in a bit, as far as these Wesurveys are trying to helpys
identify what are some barriers to healthcare.
There are patient navigation
And they're really involved with networking.
Because one of the complaints I hear about researchers, and
I'm not exactly Native American,
in this population. That's probably the reason
I wanted to relocate back out there, was people come in
and start "helicopter research."
They don't share the results They do the work, they leave.
And so, we'll get into how we have done what's called
community based participatory research.
So this really lays the foundation of trust for the
entire project. Now, what the NCI wants to know
every year, and we have to do annual reports,
non-competitive renewal.
at a clinical trial? How many people are you getting
But that's like the frosting We'll get into that in a minute.
You can't get people on clinical on the cake.
the door, unless you get them early in their disease process.
So usually every year, I come out here and give an update and
get more ideas from you folks on how we should do this.
but part of this was to write up
this. thThere's about five papers,g
that have been written or have
this whole process. I'm a radiation oncologist.
I wish I had an MPH,
That's another reason I come but I don't.
your expertise. And if I had time, I'd go back
and get my MPH, but it isn't
in the next year or two. probably going to happen
So this slide here depicts That's another story.
navigators have with patients tas they go through treatment.r
It's in the order of around 50. So there are at least 50
interactions per patient
In follow-up, as thit goes down to 21.ment.
That makes sense that the intensity, and you can't read
those numbers, but it is
Now this kind of summarizes a lot of things of our program.
One, you can see the extensive
background, in case you have a support system in the
driving up the Reservation. fla( light laughter )g as you're
It's a joke, okay?
He goes out there. This is Kevin, our navigator.
out there. He's head of all the navigators
on almost a weekly basis. This slide, you can't see it
in the back, but this lists the miles that our CRRs
put on per year.
they put on 5,100 miles. So, in Pine Ridge,
Then in Cheyenne Rivers, In Rosebud, 5,700 miles.
She puts on about 11,000 miles she's a real go-getter.
If you put in Kevin's mileage, per year.
put on their vehicles, our patient navigators
That's an enormous amount of outreach that's going on.
So, at the end of five years, this grant is about
a $5.4 million grant. That's a lot of money that
NIH puts toward this project. Has there been any impact?
Have we had any efficacy? I want to talk about the impact
on patient navigation.
in treatment interruptions? Has the overall experience
for Natives been enhanced?
in trust toward Hathe healthcare system?e
This is an article that Sarah put on your Web site, as well.
We wrote this in conjunction
basically going through what's with UW and CDH, but it was
There's been a lot of cultural called cultural competency.
But again, trying to get into incompethis issue of--ppened.
I'm sorry, you can laugh here,
A lot of people come in. but it's true.
and do this research. ThIt just doesn't happen.in
But it at least describes our experience.
This is a research that I was involved with when I was at
the University of Wisconsin.
was in cervical cancer My initial area of research
Cervical cancer, and head and neck cancer are two treatment
sites that we know, that if you give them a week off during
the middle of their treatment,
by about seven to ten percent. their cure rate goes down
someone starts their cancer treatment, they need to complete
it in a timely fashion
This is just some data that we generated back in the '90s.
So that's why it's important
head and neck, cervix, and that for certain tumor sites,
you need to complete. aSo what this is showing, and
this isn't a randomized trial,
are Natives who went through but the control group
versus those who were navigated. treatment who weren't navigated
in treatment breaks by at least three to four days,
which can actually make an
So that's at least one piece impact in someone's cure rate.
This is going to come out in two of the puzzle.
This is a disparity article athat's coming out next summer.
I would be happy to provide any of this information to you.
This survey, when you put this
two surveys that we wanted grant together, there was
One is a community survey to identify and document the
barriers to timely and effective
and treatment. cancer screening, diagnosis
survey that was administered This was a 1,000-participant
We had to go through one-on-one.
We had to go through training. focus groups.
is about there. Rebecca, raise your hand,
she's been working intimately with this project.
She helped put this together. I'm going to share
some of that data with you. The other one that we have
is a cancer patient survey. And the basic hypothesis is,
do Natives who walk in with early stages of cancer have
a different set of attitudes
than those who come in and beliefs towards cancer
Case in point, with metastatic disease.
We're out in the community. I'm down about three hours
away Rapid City.
isolated, you should go Iout to the Reservation.is
So we goon the radio and
It takes about a tank of gas do this little talk show.
Probably because to get out there.
but that's another issue. So, it probably wouldn't go over
well in Madison, but that's just
So, I'm filling up my gas tank the way it is.
goes, "Oh, yeah, you're that and this guy looks at me and
on the radio." cancer doctor that was talking
if you get cancer, you're going He sayto die anyway."matter
Well, if that's your attitude,
for a PSA. you're not going to go in
we're trying to get across. Now we have a co-PI, her name
is Ashleigh Guadagnolo. She's a Native American
radiation oncologist
She's now at Indiana. She helped put this together
during her research.
is a hypothesis testing instrument designed to determine
root causes of cancer differences and cancer related
outcomes among Natives
So what we're doing is and non-Natives.
150 Natives and 150 non-Natives. surveying, I think it's
through some preliminary data. And we at least want to go
through modification of existing Multiple scales were developed
Native American participation scto develop a culturalnd
appropriateness and engagement. The content and validity is
verified through focus groups.
in helping put these together. Again, UW is very instrumental
consistency of these scales, There was good internal
at least a valid measure. So this is based on 52 Natives
and then a 113 non-Natives. There was, I'll just read
from the slides here. Native Americans expressed
significantly higher levels of mistrust and lower levels
of satisfaction with
In multivariable analyses, race was the only factor found
to be significantly predictive
satisfaction of the healthcare, even when adjusting for income,
education and geographic
This article has been written. remoteness.
I hope it's going to be It's been saccepted.for review.
The same data set, now looking
assessing knowledge at anotand attitudes.stions,
This is, I think, quite interesting.
And Natives scored lower
and exhibited more negative attitudes about cancer treatment
than non-Natives. And again, in multivariable
analyses, Native American was the only factor found to be
significantly predictive
and more negative attitudes forabout cancer treatment.dge
That's the subject
There's a persistent of the second manuscript.
Natives in this particular stage disparity.
with more advanced, and this data set, again, presented
more advanced stage that were screen detectableh
cancers than non-Natives. For example, breast, cervical,
colorectal and prostate cancer, they weren't diagnosed
as part of the screening test.
detectable cancer, Patients with a screen
was about 70% for white tversus about 40% for Natives.t
Again, consistent with what you would think, that they're
not going in to get screened. Implications.
Stage disparity shows continued barriers to timely
and effective cancer care.
with prior healthcare emphasizes Mistrust and less satisfaction
Less screening knowledge and the need for patient navigation.
cancer emphasizes the need more negative attitudes toward
And as we go through this, for educational interventions.
to go through a lot of data, just stop me, because I'm going
that you want to comment on. if there are some things
get our hands on, is what is One of the things that we can't
It just doesn't exist. the screening rate out there.
talked about looking at charts. That data, unless somebody knows
it in the room here,
We'd sure like to know if you do, let me know later.
We've now completed all the surveys for the initial 900.
Rebecca, she's the one who mined
what the screening rates are. thFor breast cancer, 61%.are
Cervix, 49%.
for females and males. Colorectal, very low
This is now again from And prostate cancer, only 32%.
indicated they were more likely the cto get screened if:tives
a screening advocate made a public presentation;
if a screening clinic came to their community;
if they knew more about screening;
if they had help
with transportation;
And 53% of the males and making appointments.
obtaining cancer screening after 70% of the females planned on
One of the dilemmas here, we went the tribes and we'll
talk about how we were able to consent the Lakota Nation
to participate in this. The comment stated to us was,
"You know, we're tired of you guys coming in and asking the
same stupid questions." And our response to that
was we understand that. We're trying to identify
barriers. But not only are we trying to
identify barriers, we're doing
We're providing money for food, transportation and lodging.
We're providing state-of-the-art cancer care.
And if we can, with a positive
about food, transportation peabody, show that it's really
of the issues, then maybe and lwe can go out--'s one
ACS, raise your hands, because
the American Cancer Society. I'm working with these guys,
in oncology, just like We can't speak in full words
What's that guy talking about? the military.
justification to put some type Maybe that would be enough
So, that's what we tell them. We want to do something.
We want to take this
to an intervention. Okay, Shannon, raise your hand.
Shannon Sparks, CDH,
I have a lot of background a medical anthropologist.
That's why I'm working in this, right?
So we asked her to go back and with you guys.
survey, and to say can you find out for us, is there anything
in there that would say something about, you know,
subjective inpoints, like trust and missatisfaction.
And so, I'm just going to go
Shannon has put together for us. through some of the data that
in the community survey. So, three open-ended questions
We'll just go through the data You can read them up there.
Initial review of the data that she was able to generate.
of barriers to accessing care. showed two primary categories
transportation, money, Structural barriers, lack of
insurance. child care, accommodations,
within the healthcare system. AWe're talking about Indians
Health Service, service access, unable to get needed referrals,
delays in getting and receiving care,
quality of treatment delivery,
It is our subjective experience that when you work with this
population that that's what's going on.
And there are a lot of delays.
to do, which isn't popular, And part is to documentsupposed
what those delays are.
the patient having a symptom There are the delays of
That's delay one. to There's a delay of seeingan.
a physician to actually getting a diagnosis.
That's delay two. Then there's the delay
of having the diagnosis and seeing a cancer specialist.
And sometimes that delay
Sometimes it's two years. So you wonder, gee this is why
they come in here with incurable
We're not here to point fingers, but we're here to try
to point some issues out
One-third of the respondents so we can help resolve them.
needed healthcare. reported problems accessing
again, some of this we've gone The most common complaints,
Can't get needed referrals, transportation,
not enough doctors. I mean, it's no surprise that
someone who trained in Boston or New York, and they had their
medical school paid for through that program,
they probably don't want to spend ten years in Pine Ridge.
They're doing their six months
I don't think it's as bad as and getting out of there.
there's a turnover. And the people that are there
the most consistently are going to be probably
the physician extenders,
folks of that nature. Okay, so has there been an
impact in patient navigation
interruptions? and a reduction of treatment
Has the overall experience It would appear so.
We are now administering pre- duand post-patient navigationd?
surveys, 230 Natives
This is a little bit like asking me do I love my mother.
Well, of course I do. It is the experience of the
cancer center staff that patient
the overall process for Natives naundergoing cancer treatment.ed
Completion rates, satisfactions,
I'll give you an example. Head and neck cancer is one of
those that it's really tough
Patients have seven weeks of radiation and chemotherapy.
They need feeding tubes.
from treatment, their cure rate If probably goes downff
by seven to ten percent.
to these patients. Our navigators latch on
They'll check on them. They'll go to their hotel room.
It's a phenomenal undertaking to get them through their
treatment.
During this little excursion Okay, I'm going to break here.
this is Valley of the Gods. If you've been down there,
this is a cool area.
interstate there. That looks like a good idea to
put a 30-foot motor home on, but
I don't know if you ever saw you know, I wanted to see this.
with Chevy Chase that movie, "Vacation"
We were close to it. when he goes cruising off there.
The road got washed out. We came up on this river bed.
I measured how long our vehicle Ais, and I'm thinking
I can really do this. We can get through this.
( laughter )
dad you've got to back up. My kids are just looking like,
that were touring at that time. SAnd one of these little vans
kind of got stuck and we pushed them out.
So, okay, I'll back up. And we got out of there.
So that's as close as we got
halfway through. to the Valley of the Gods,
that actually stands for And this IHS there,
My kids are all into hockey. International Hockey School.
All right. I kind of like that.
Breast cancer, we have, Nand hopefully this is common
knowledge.
can either have a mastectomy But a woman with breast cancer
six weeks of radiation. There's been tens of thousands
of patients that have gone
We know those are equivalent to clinical trials.
Western South Dakota, unfortunately and historically,
has had some of the highest mastectomy rates in the nation
for all races,
what your background is. it doesn't matter, you know,
distance from the cancer center. One of the reasons is probably
Natives have, I would argue, So some of the issues that the
has as well. a lot of other rural population
That relocating to Rapid City or UW, although there are a.
lot of clinics around the state here, is a contraindication.
It prevents them from going through breast preservation.
Brachytherapy,
This is what we use this isto treat cancer.rator.
I know you're not all cancer physicians.
But that's the type of machine
for six weeks. that's used to treat patients
It doesn't hurt. It's painless.
This is an approach that was That's the standard approach.
and perfected. actually really pioneered here
the reasons I still keep Breast brachytherapy, one of
if I need to, I can come back. my privileges here, so
to do this when I was on staff. But I came back to get trained,
to do both of these techniques. I'm sure there are radiology
oncologists in the back.
You guys all know who each other are.
The guys in the white coats are radiation oncologists.
( laughter )
They're the Cavalry. They're the good guys.
So, what this does, is it reduces your treatment to
five days if you're a candidate.
clinical trial So, this is a very important
If women were eligible, without going into all the details,
they could have five days of
They had to be relatively radearly stage breast cancerks.
to have it done, but the
The staff of UW came out there technique was perfected here.
things properly. to make sure that we're doing
You don't put 20-30 catheters Thesin someone's breast--ions.
And I didn't go through the whole treatment here.
What happens is this little balloon that comes out of
the woman's breast, or these
to a little robot that has catheters, is hooked up
travels out of that machine a radidown a cable.pe that
Then it spends around ten to 15 minutes, either in this
balloon or in various portions
They just deliver radiation of to that part.rs.
I knew there'd be non-physicians
a lot of clinical pictures. I didn't want to scare you.
But it's actually pretty well tolerated.
So we have probably done about
We try to do a lot of this 40-45 patients this way.
It's been tolerated very well, on clinical trial.
This is an interesting program. ACS, raise your hands again.
You were instrumental in
This is the breast-- helping out with this program.
so you know who you are. We're introducing you guys
screening program. So the breast and cervical
program, that if a woman, regardless of race is below a
certain income level, then
screening for breast cancer she'or cervical cancer.aving
So if you now imagine that
out in the Reservation. They're promoting screening.
A woman goes in, she gets screened on a Reservation.
Hopefully she doesn't have
hopefully it's early stage cancer, but if she does,
breast brachytherapy and if she wants, she can have
in five days instead and be done with her treatment
So that kind of nicely closes the loop in how this would work.
The other thing that's nice about this program, at least
in South Dakota, if you're
program, your cancer care diais paid for, independentis
of Indian Health Service funds. That's huge.
Because there's a limited pot of
So it's another way to get money for Indian Health Service.
and get it paid for. through the treatment
a lot of treatment options Prostate cancer, there's
Just so you don't think we just pick on females,
we picked on males as well. This is another form
of brachytherapy. It looks a little bit brutal,
but patients don't feel any of this.
They're asleep when it's done.
seeds into the prostate gland. But what we do is we put little
It's one treatment. If they're early stage prostate
cancer, cure rates are 90-95%.
Unfortunately, a lot of what They go home the same day.
prostate cancer. we see isn't early stage
So one of the protocols Wewe have requires, insteadd.
of five weeks of radiation, we do it in three weeks.
And then we do a different type of brachytherapy
to complete their radiation.
because of Tomotherapy. We doAnd credits to UW.that
You guys have just led the way
And one of the things I've said before when I give
these talks is what's called
The Wisconsin model is you have all this great technology here.
But are you going to implement
and who's going to do it. And here's an example
of the Wisconsin model. A gentleman on staff here
went back to the drawing board
the best way to treat radiation andfrom the outside.out
Just because of the interest
into all the details. oBut this is a non-invasiveo
way of delivering radiation.
conformality, or how precise it is, you can reduce eight weeks
of radiation, in some instances,
So the clinical trial that down to two or three weeks.
successful trial that we we opened in Rapid City.ost
It's a collaboration with UW
It's kind of funny to see our anname below all these other.
big guns, but that's all right. What it is, it condenses
radiation to the prostate down from 38 treatments,
to 22, to 16, to 12.
the number of treatments, you increase the dose.
The reason that we can
the precision of how get away with it is because of
I just presented this data this technology is delivered.
There's been 270 patients that in LA about two weeks ago.
We've entered 40 ourselves. have beeWe have not seens trial.
any bad toxicities. So that's another great study,
great technology
the clinical trial to increase they're implementing as part of
So this is a radiation sunburn. That's a bad side effect that
we don't want to see, but sometimes we do see it.
And part of this project was, it was the anecdotal experience
of physicians treating Natives
that they seemed to have more intense radiation reactions.
And why is that?
There's a gene called ATM. Well, it's a complex question.
correlate ATM heterozygosity So the idea was, could we
a radiation side effect? to the development of
tower of UW, I'm not picking on Syou, that sounds like a greaty
question to ask.
going to do a genetic test When you think about it, you're
and you're a white radiation on the minority population
That may not go over very well. So it took about three years
before we even introduced that
But once we introduced that concept, and we got the trust
of the tribes, it was an easy thing to recruit.
We draw the blood, 100 Natives, 100 non-Natives, and we send it
to UW where Amy,
she's a PhD basic scientist I metin the Departmentrning,
of Human Oncology.
So far, they've done They sequence the genes.
And I think we're approaching 80-85 non-Natives.
So the data to date on this-- So again, what we want to do,
in the future, this is what cancer is probably going to be.
You biopsy the tumor, like say for breast cancer.
You determine what type of breast cancer it is.
Is it going to respond
Is it going to respond to chemo? to hormones?
tumor related treatment. So that's going to be
And how do you protect the host? Well, you also have the host.
to share with you that can Well, there's now data I'm going
susceptible to, in this case, tela radiation reaction.ore
So if you did a biopsy of a normal tissue, or a blood test
in this case, if you find out this patient is going to be more
susceptible to a side effect, it would alter your treatment.
So to date, this is an enormous undertaking.
I have my notes here, so I'll have to just wing it, because
I don't sequence the gene.
they have sequenced, I think, But about 5300 axons.ne is
They have complete data on half of these patients.
We haven't broken the code yet, but 11 variants have been
identified that would result
This is pending publication as in an amino acid change.
community to get their trust far as how do we do this in this
this protocol. in order to implement
the amino acids change. This is the most common variante
identified down here. What we don't know, are these
patients, is this genotypic change going to result
in phenotypic expression. We don't have a test to see
if this protein is or isn't going to be non-functional.
In this case, meaning that it wouldn't repair the radiation
side effect.
to be the development Tof acute radiation toxicity.
We'll break the code eventually.
in doing this study. But we've been very successful
we started in 2002, these are Sthe number of patients,gh
Native Americans, that
Six of our own, it's actually higher now;
13 in cooperative group trials; it's now 31 for ATM;
patient navigation is 227;
general survey now 1,000. We now have entered nearly
1,500 American Indians
Now, a lot of that is social science research, which
the NCI views as equally
So we're getting there. Now, the good news or bad news
is the NCI said to us,
back and look at your population we want you to go
And see if there's any in western South Dakota.
that are underserved. We'll use the term underserved.
So each county has what's called an IMU, or an index
of medically underserved score. It turns out that everyone who
lives in western South Dakota is medically underserved.
So now we can count everybody,
That's good news from NCI's perspective.
That's bad news inif you live out there..
But it isn't that bad.
underserved, too. So, if you now pool everybody
together, that's gone on these
pitch to the community is tthat not only is this fore
the Native American population, it's for everybody.
We have nearly 2,000
on various studies participants that have gone
That shows the same data set. ofCommunity basedd.
participatory research. This is a slide I got
from someone from IHS about a week ago, going through,
what is it that researchers need
in various Reservations. to do to implement research
written up. AndWe've written it upbeen
from our own perspective. I'm not going to read this
to you. We can go through that
a little bit. It's going to be different for
each investigator that goes in. But there are certain
common themes.
is when the Tomotherapy Now, onewas implemented.ave done
This is a medicine man. What we've done is we've
actually partnered with the medicine men, where we don't
think that western medicine and Native American healers
are mutually exclusive. So we work with them, actually.
This guy came out and did a blessing
of the Tomotherapy machine. We will get direct referrals
from the medicine men, who will tell their patients you now
need to go and see the cancer physicians up in Rapid City.
Our head navigator is actually
So that helps when you have people in the community.
I show this slide partly
have a protocol in Madison out of amusement, but if you
Basically, you write it up. aYou send it to your IRB and.
you start accruing patients or asking the question.
So we had to go, for each protocol, there's like 12 now.
We had to go to each
health council and get a letter. Reservation, to each tribal
when you add them all up. ThereThen we had to go totters
the a local IRB.
to the national IRB. Then we had to go
Then we go to our own IRB. Then we go to UW's IRB.
did this for me. So, our project manager
This is just the timeline. This is just one protocol.
This is why it took You about 18 months.re.
Our patient navigation--
shaking your head. I can see you all
It is possible. ( laughter )ght.
You don't have to be
But part of it a glutton for punishment.
So that's part of this is paying your dues.
participatory research. They know who we are now.
And that we're not
I'm going to talk a little bit going to just disappear.
Why some of our trials about clinical trials.
One is patient convenience. You know, you're not going
to sacrifice care for the sake of convenience.
But some of these treatments, if they're more convenient, and
if they have side effects that are the same or less,
then that's very acceptable for this population.
MD considerations, they have to fit into community standards.
Community based participatory research, CBRP, I'll give you
a couple examples of that.
we've done is looked at, for Now, one of the things that
what percentage of patients everwent on clinical trialted,
and who didn't. We're also including ATM
as a trial. There were 21% of the patients
who underwent patient navigation
under clinical trial. That number is historically
less than one percent.
question is why do patients not go in clinical trials.
We've looked at this for both the Natives and non-Natives.
And the overwhelming theme
advanced stages of disease, or poor performance status.
If somebody comes in with metastatic prostate, breast
or lung cancer, it's too late.
but do we switch into I mea palliative mode.em,
That's a little commercial
This is at Bryce Canyon. break.
They were getting tired of having their picture taken.
It was pretty funny.
and they would get into My wifethis formation.ne-up,"
She did this one time and a Marine walked by.
He just thought that was
( laughter ) the funniest thing.
If you ever have time to spend a This is Arches National Park.
there, it's just unbelievable. week in the national parks down
comes back in the fold again. If it's going to be a matter
of getting people in earlier
more primary care physicians in the disease process, we need
radiation oncologists. involved, and probably not
implement the same thing for men So, what we wanted to do is
which is the program. We put together this program
called, All Men Count, which
and Spirit of Eagles. So what we did, with Lisa,
raise your hand,
These two, with Shannon and Sarah, they helped put together
this program. What we did, is we drove out.
We put this together. You would think doing a cancer
screening clinic would be an
It actually took about ten easy thing to put together.
Spirit of Eagles months to fund this whole thing.
with Kathleen's research. Kathleen spent a couple months
with us.
first step in screening, get men What we wanted to do is the
and colorectal. Here's the drive on the way out.
There's a number of things
One is, you see the four-lane interstate.
Okay, you don't see that. Two, like Kevin's slide,
there's really no McDonald's
And three, you see this ominous storm that we were driving into.
But fortunately we were able
and go the other way. We got there.d
That's our planning station,
together. There was an intake survey.
There was a survey
So there was some data we were to take afterward.
I like this slide. talking about getting analyzed.
discussion was. IBut this is Kathleen.is
She's kind of embarrassed.
I have no idea what these two are talking about, but I just
kind of thought that was a funny
There's something on her boots, but I'm just going to leave it
up to you.
You were persistent. You were patient.
I like this picture of Lisa. You hung in there all day long.
I'm not sure why he's laughing This is Kevin, our navigator.
I'll leave it up to your so hard.
It was a fun day. It was a rewarding day.
I think it was Lisa who said
one of the patients said, you know, I can't believe,
Dr. Petereit would bring all
That's really all it took. these people here just for us.
are obviously very underserved. AndThat's why we're doing it.at
So it was very gratifying to have done that clinic.
This is what used to exist
piece of telesynergy. But the reality is this is
a pretty rich institution,
didn't need another piece so youof telemedicine.obably
It was being underutilized
and Madison. between ourselves
You have one. But because I trained here,
I'm on staff here, I need some hands-on experience.
I'll just come back here. It was underutilized.
So the NCI said to us,
or redeploy it. So after considering all the
options, we redeployed it to Pine Ridge.
So that system went from here to Pine Ridge.
The ultimate goal is to hopefully improve access
to healthcare.
I know you probably can't see this in the back, but
we're going to stay strong
That's what I'm trained to do. in clinical trials.
in genomics. We're going to get more involved
Discuss patient navigation. We need to expand that program.
We really need to get into
And then palliation is basically non-existent.
That's an area
This is kind of a neat story. This technology is now here,
if you let me digress for a moment.
Right now, we're looking at one gene to determine whether
or not there's a correlation
a radiation side effect. between that and
where we can take a patient's Well, blood, lymphocytes,exists
characterize the DNA, the whole genome, the DNA
microarrays and signatures, radiate the lymphocytes
twice in the lab and repeat it. So there you would get a whole
picture of their genome.
we put in a protocol that was funded through UW, and
we've identified 20 Natives,
and ten without. ten with complications
this whole process. It's a small step, but hopefully
it's going to help in further characterizing how to
better treat the cancers. This is important.
If we do identify a patient that has a molecular profile
that looks like they're more sensitive to radiation,
you probably don't want to give them 12 large fractions
of external beam, as opposed to 38.
Maybe they're a better candidate
for brachytherapy.
but it is going to help. for surgery,
This was an interim funding from the NCI because our grant
officially expired 9-1-07.
last year, I said, guys, we've So when I came back here
what we're going to do here. got to start thinking about
was going to cease The NCI knew that our funding
So when we put in a screening supplement last spring,
it was funded.
increase screening rates The whole goal was to basically
What it is, in essence, and that's a good cast to do it
in 12 months, we're not going to increase the
screening rates for everybody.
what this consists of is we Butnow have real extensiveion,
training going on for our CRRs
Representatives. or Community Research
focus groups. TheyFocus groups first.ding
But they'll administer
The endpoint is going to be, these education modules.
go for cancer screening. how many of those patients
but it's what's required. We're going to be using what's
called these ARS systems, or Audio Response Systems.
So that's another project in itself.
But I want to discuss that
as we set up meetings. with many of you tomorrow
with the program? So hWe think probablycess
the biggest that we've done is implemented--
There's two things. One is, implementing a research
infrastructure in the community hospital setting.
This was a growing pain for the NCI.
Every one of these
I was probably the only PI community hospitals--
because I was on staff here that hadfor five years.ackground
All these other communities,
hospital administration. it totally stressed their
stressed our hospital I canadministration.tally
But they got over it. But that was a hurdle
and a barrier in itself.
of just getting the trust Theof this population.rier
We can't rush this. It takes a lot to get
the trust of this community.
is built the infrastructure Buand trust that allows forone
future research to take place.
if you have an idea, you want Soto work with us on it.l,
We think that we have system
successfully implement it. in place to where we can
what we think are some early I talked a little bit about
patient navigation program. measI wish I could say, our
I think someone was here
were able to be show a year ago or so, that they
for breast cancer patients. thThat's not going to happenon
on this project for another five years.
You've got to implement the groundwork first and then
hopefully you get into screening
presenting earlier and you have patients
Okay, our next grant. in theWhy continue?ocess.
This is 90% of why I'm here today.
Has this been mutually
our institution and yours? beneficial between
by other universities. We've been approached
clearly the most logical choice. But from our perspective, UW is
on the experience of the past five years.
Again, we put this
like this genomic study. infrastructure in place,
that since we did the ATM study. It's easier to now implement
innovative treatments trials. We wA big part of this is,hese
I don't have an MPH.
I know my limitations. I'm not a social scientist.
that's your expertise. But I know a lot of people,
there's been a dialogue going on with Sarah and her group.
Maureen will be meeting with a lot of you soon.
I always tell people, you know, if this doesn't work,
I understand. Because you need to be able
to justify to the taxpayers in
with this guy in South Dakota. Wisconsin why you're working
in Wisconsin? ASo one of the ideas would be
if you felt that this has been
maybe it's something that you can do it in Wisconsin.
We need areas for more
We desperately need help screening and education.
And again, maybe some of with hospice and palliation.
out there can be applied the lessons that we've learned
This is a slide from my staff. to this area.
audience. I said, tell me what you want me
to communicate to them. I'm going to read through it.
This will give you an idea
in the next few days. So for our training, can UW
develop a training program
become confident in interviewing for our CRRs, to be able to
when conducting follow up and for screening tests?and
Tracking Tools. Can UW develop tracking tools
for the different strategies
in terms of tracking we try in each community,
navigation program? anQualitative data analysis.g
Here are the data sets we have. Patient navigation.
We have qualitative data
There's all sorts of databases from summaries.
Palliation. tWe don't have any programd.
in place right now. I know Spirit of Eagles
has a program called
Train the IHS physician. Train the Trainer.
to train the physician extender, But it might be more appropriate
are only there because the physicians
So, other areas for aof collaboration.nths.
I've spoken to many of you
There's a whole telemedicine about this.
We have a lot of money that can be put into that Reservation,
$350,000 into Pine Ridge
Do you have ideas here? I've heard about some of them
that maybe we can implement out there.
What I really need
I'd love academics is some junior co-PIs.
We have about 15 papers that who have done a lot of writing.
completed in about six months. are going to be submitted and
I only have so much time. I'I'm 35% salary on grants.
right now.
that would be interested. IAnyone who has gone throughs
the training and you're looking for a job, we're looking
for a program manager.
but we put this out. Sorry to be bashful about it,
But we're looking for a PhD, You've put it on your Web site.
I can't go on as a PI and for any more studies.ause
What would be the rationale for anyone to participate?
Well, if you analyze the data and you write the paper,
you're first author.
as a junior co-PI to provide funding here.
The questions that we ask in South Dakota
we can ask in Wisconsin.
Here's the other commercial. And then there's the other.
to come work with me? You don't have to live there.
The Black Hills are very nice.
part of the country. It's a beautiful
pretty spectacular. I think I got these slides
from Lisa.
during the Sturgis rally. T( laughter )to go up
They met a couple friends while they were up there.
I'm just kidding, okay. All right.
Here's the staff. I think we have about 13
or 14 people that we employ.
She was just out here recently This is Linda.
There's a lot of collaborators. The initial collaboration
started with the Department of Human Oncology.
Now we're really collaborating
Health, CDH and I'm really with the School of Public
Lisa, Kathleen. grI mean, all of you folksn,
have just been really critical
off the ground in areas that in getting a lot of this
It's been very helpful to have we lack the expertise.
You all know John Neiderhuber. friends at the NCI.
director here. He used to be the Cancer Center
of the NCI. He's very much interested
in what's going on out there. But we envision continuing
with these same collaborators.
How did we come up Walking Forward.
It actually came from one of our staff.
We obviously couldn't go into the Reservation and tell them
what the name of our grant was. Because, what does that mean?
So, the idea was that we were going to walk forward.
We were going to
We were going to try to resolve a lot of these problems.
We were going to offer
And we were going to be there for a long time.
This is Lakota for "walking forward in good health."
This is a slide of the NCI. This is Norm, Frank...
These are folks,
They were passionate and these two came from Harvard.
a disparity program. wanted to implement
because they really got this program off the ground.
And this is your own Paul,
I just came from a meeting who's the chair of DHO.
I really liked this quote. in LA a couple weeks ago.
than genetic and molecular "It's really more about people
Now, we're very much footprints."
aspects, but you know, interested in all those genetic
to help these people. we'rSo I call thissly,
the Walking Forward tree. This came from Bryce Canyon.
Isn't that a wild picture?
we did that allowed this. Hopefully, we've shown somet
measures of success, but it's really been a multifactorial
approach that's been required.
and being thoughtful We've been very innovative,
in the community. andIt doesn't work ifle
I'm the guy behind a computer writing all this stuff up.
You need to have
That's what the CRRs a community presence.
All right, thank you very much. ( applause ) have ished.