Linda Mowad, RN, The Cancer Information
Service
October 19, 2008
Welcome to Yale Cancer Center Answers with Dr. Ed Chu and Dr. Ken Miller. I am Bruce Barber. Dr. Chu is Deputy Director and Chief of Medical Oncology at Yale Cancer Center and Dr. Miller is a Medical Oncologist specializing in pain and palliative care, and he also serves as the Director of the Connecticut Challenge Survivorship Clinic. If you would like to join the discussion, you can contact the doctors at www.canceranswers@yale.edu and the phone number is1-888-234-4YCC. This evening we are joined by Linda Mowad. Linda is the Director of the National Cancer Institute Cancer Information Service at Yale and she begins with an overview.
Linda
The Cancer Information Services, the National Cancer Institute,
which is the Nation's lead agency for cancer research, established
the cancer information service in 1975 to educate people about
cancer prevention, risk factors, early detection, symptoms,
diagnosis, treatment, and research, and the CIS is an essential
part of the NCI's cancer prevention and control efforts.
Chu
When did the cancer information service effort begin here at
Yale?
Linda
We took our first call in September 1976, so we have been here for
a very long time.
Miller
Two-part question for you, when the public wants to call and get
information about cancer, what number would they dial and then what
happens?
Linda
They dial 1-800-4CANCER, or 1-800-422-6237. The phone is
answered by a trained cancer information specialist who is trained
to assess callers' questions. Most people call and do not
really know what to ask for. They have just been diagnosed
with cancer perhaps, or they have a family member who has been
diagnosed with cancer and they really do not know what it is they
need to know. The information specialists are trained to assess the
callers, look at their questions, and are able to answer them.
Chu
As an example, the patient calls up and says that they have
prostate cancer. How would the specialist help that
person? What would they ask?
Linda
We first do our disclaimer that we are not physicians, but we can
answer questions, and they talk about the information they use and
their disclaimer. They might ask, for instance, when were you
diagnosed? Where are you being treated? Where are you
being seen? What have you talked to with you doctor
about? What is it you would like for us to help you with
today? Then after they ask their questions, another
assessment is made. They say, well it sounds as though what
you might be looking for is such and such. We also will give
them resources that they probably have no idea exist, and we tell
them what they are, and we are able to talk to them perhaps about a
second opinion. We do not make second opinion referrals for
sure. We do not do medical consultations, but we certainly
can talk
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about a second opinion and the resources. We send them
information and everything we do is free. There is absolutely
no charge whatsoever. There is no charge for information that
we send and we send information to over 80 percent of our callers.
We just check in and keep telling them that they are welcome to
call back the days we're open.
Chu
Typically, on a monthly basis, how many calls does your office
receive?
Linda
I can tell you more easily how many calls we do yearly. The latest
information I have is from 2007, and in that year we received
90,628 calls to the 1-800 number and we also have automated
massages that are available 24/7, 365 days of the year. We
have had 26,221 inquiries through that. We also have live
help, which you can get on the internet, and a lot of people do
that through either instant massaging, which is 15,232, or
e-mail. People can get onto the web and there is an icon
there and we are able to speak with them as well, 5,642. So
for the year of 2007, we had 137,723 calls.
Chu
So a very active service.
Linda
Yes it is.
Chu
What is remarkable is that it's free to the public.
Linda
Absolutely, totally 100% free and tailored to the callers'
needs.
Chu
This is something where we really need to get that message out.
Linda
Exactly.
Chu
The services available should be taken advantage of.
Linda
Absolutely, and they are from 9 to 4:30 everyday Monday through
Friday through the phone service with TTY. We have TTY
accessibility and the other services, as I said, are available 24/7
on the automated messages. Live Help is from 9 a.m. to 11 a.m.
Eastern Time.
Chu
Linda, if a patient or family member calls and their English isn't
great, are there other language services that are available?
Linda
English or Spanish, yes. We have bilingual information
specialists for English or Spanish. We do not have other
foreign languages. However, we do have some resources in
other languages and we can refer them to other places where people
can get information in other languages.
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Chu
Great.
Miller
There is another group of callers, I would imagine, who
have done their reading and have learned a lot and they want real
specific information, such as what protocol is available or what
kind of studies they can participate in. What can you do for
that?
Linda
The callers to our service are educated. We do demographics
on 50% of our callers and they are highly educated. A lot of
college graduates and postgraduate work as well, so they have
already, as you said, done their research. They have talked
to their doctor, they have their questions and they want very
specific information. Our information specialists are very
well trained and can provide that sort of service. For instance,
somebody calls up and wants to know about a specific clinical
trial, for instance, where it is, what is happening, and if we can
tell them a little about it? We certainly can do that. We
have access to the clinical trials from the National Cancer
Institute that are in the National Cancer Institute database. We
can also refer them to other NCI designated cancer centers across
the country. We can help them look for second opinions if
that is indeed something that they need, but we can tailor the
information by the way the information specialists are trained to
assess the callers' needs, we can actually give them whatever it is
they need, and if we do not have the answer to a question, we
certainly have no problem saying, I do not know the answer to that
but I will get back to you. Almost 100% of the callers'
questions are answered at the time of the call. We very
rarely have to call back.
Miller
That is interesting; you mentioned that you generally refer
patients to the NCI designated cancer centers for clinical
trials. I am just curious why is that the case?
Linda
Our policy says that we cannot make second opinion referrals to
specific physicians. So if someone calls, for instance, and
they want a second opinion, and we talk about a second opinion and
during the conversation they say they would like a second opinion,
what we tell them is to certainly go back to their doctor. We
never, ever interfere with the doctor-patient relationship, so we
refer them back to their doctor. We then talk about the NCI
designated comprehensive cancer centers in the area within which
they live, and if they are calling from Connecticut, the only NCI
designated cancer center is the Yale Cancer Center. So we could
make a referral to the number there, not to a specific physician
but to a number that we have been given by the cancer center to
use. After that, we refer them to the American College of
Surgeon Cancer Program Approved Hospitals in the state within which
they live, or if they'd like, we can give referrals all across the
country. That is never a problem because we have those kinds
of resources, and in this day and age of the internet, it is very
easy to do so.
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Chu
Great. Maybe the other rationale for referring people to NCI
designated cancer centers is that, as you said, Yale is one of 39
designated comprehensive cancer centers. That means they have
state-of-the-art, cutting edge, innovative new therapies either for
direct treatment, prevention screening, supportive care or
survivorship, which is obviously a huge interest of Dr. Miller's.
All of the groundbreaking work is being done at NCI designated
cancer centers.
Linda
Absolutely, and being funded by the National Cancer Institute, we
have all of the information quickly at our fingertips. If we
need anything we certainly can call them and get more information,
and if we have people calling wanting to know about something that
is not in our database, there are ways that can be included. We
have physicians call and ask how their trials can be included, and
we can give them that information as well.
Miller
I would imagine that when patients call, or their loved ones, they
are scared.
Linda
Oh, yes they are.
Miller
The people that answer the call, what are they hearing from the
callers and what do they do with that?
Linda
Well especially somebody that's a younger person, for instance,
they are terrified that they have heard the word cancer. The
other thing is that when they call they really do not know what to
ask. They have not heard, perhaps, what the doctor has said
so they are looking for information. A young woman just diagnosed
with breast cancer may have no idea what to think and has talked to
her doctor but really does not know what the doctor is
saying. The information specialists have been trained really
well; it is a very intense training that they go through.
They are not social workers and they are not
counselors. We have many nurses, but they cannot give medical
information as they would if they were working in the hospital or
in a clinic. They are able to assess and try to help calm the
fears of the person by giving them the information. They will go
step by step through the information, what to do the next time they
go and what they need to bring. They recommend that they bring
someone with them and write everything down. You can ask if you can
record it and it is okay to ask questions and it is even okay to
expect an answer to your question. These are things we tell them to
do. We can reinforce that with the information that we send
them. They talk about what they should do when they are
talking to their doctor, and what their options are. And we
tell them that they should keep a journal. They should write
down the date they talk to someone, who exactly they talk to, what
was said, and they should call us back so we can help them through
the whole process of how to talk to the doctor. When you are
assessing a caller's needs, even though we have a plethora of
information, we clearly do not send all that. We do not want
to overwhelm our callers. Some people want everything you can
give them, so we try to decide
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what the caller needs at this point in time, not to overwhelm them.
For instance, they may have chemotherapy, they may have radiation,
and you would want to send the right information. You also
want to send information about support groups and resources because
they are going to need that. How they use that information
certainly is up to them.
Chu
Is there a mechanism for if an individual caller is calling for the
first time, and they develop a rapport with someone on the other
end, if they call back can they get that same individual in order
to maintain that conversation?
Linda
It is discouraged that they make a link with the person they are
speaking to, because they do make a link from the moment they talk
to that person and become comfortable with that person, they only
want to talk to that person. However, everyone has trained
the same way and everyone can do the same thing. The
information specialists are taught in their assessment that they
can make that decision if they want to, if they think that it would
be more beneficial to speak to them, but they do tell them that
anyone they speak to can talk to them the same way they have.
Miller
I have a personal question. What is your background and how
did you get into this part of cancer care?
Linda
I am a nurse and I worked for many years in an operating room and
then decided I wanted to do something different with my life, so I
looked into public health and cancer control. I worked at a mobile
health van screening patients and talking to patients, and I
learned a lot there. I then came to Yale and I worked and I
did some research studies. I worked with a friend who was
getting her PhD, so I did some studies with her and then a job
opening came up at the cancer center and I have been at the cancer
center since 1984. I have been here a long time.
Chu
As I understand, last year you were Chair, or President, of the
local American Cancer Society.
Linda
Yes, I am the immediate past chair of the American Cancer Society,
New England Division. I was for 2 years. I now have
been nominated to the National Board of the American Cancer Society
and that will happen in November of this year.
Chu
Terrific, congratulations.
Linda
Thank you, thank you very much. It is a wonderful ride for
me.
Miller
You are listening to Yale Cancer Center Answers. We are
learning about the Cancer Information Service with Linda Mowad,
Director of the Cancer Information Service at Yale Cancer
Center.
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Miller
Welcome back to Yale Cancer Center Answers, this is Dr. Ken Miller
and I am joined by my co-host, Dr. Ed Chu and also Linda Mowad,
Director of the Cancer Information Service at Yale Cancer
Center. We are talking about the resources that are available
through the Cancer Information Service. Linda, the CIS, Cancer
Information Service, provides information to the public and
professionals. What are some of the other goals and
projects?
Linda
We have a 3-pronged approach at the Cancer Information
Service. As we just talked about, we answer telephone calls
through the Cancer Information Service with the information
specialists. That is how we work reactively. We work
proactively through our partnership program which goes into the
community, community outreach you might say. We have worked
proactively to collaborate with organizations with the shared goal
of working together to identify, address, and reduce cancer health
disparities experienced by medically underserved audiences.
Medically underserved audiences, I do not have to tell the two of
you, are those audiences or population groups that traditionally
have had less access to the health care system than the general
population, or face linguistic, cultural, or socioeconomic barriers
accessing cancer-related services. The CIS has established
partnerships with nonprofit, private, and other government
organizations at the national, regional, and state levels.
Through the partnership program, or outreach program, the CIS
reaches people throughout the United States and the
territories. We work with partners that have an established
presence in the region, are trusted within their communities, and
are dedicated to serving minority and medically underserved
populations. We help these partners develop and evaluate
programs on breast cancer, cervical cancer screening, breast cancer
screening, clinical trials, tobacco control, and cancer awareness
especially for the medically underserved. The CIS also helps
partners develop coalitions, conduct training on cancer related
topics, and use NCI resources. I mentioned we are a 3-pronged
entity. We also have CIS research. In our research,
we
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participate in cancer control and health communications research
that supports NCI's programs and priorities. Our research
helps identify new and better ways to communicate health
information to a variety of audiences. Today, we have
collaborated on more than 50 studies through the Cancer Information
Service that have helped researchers learn better ways to
communicate with people about healthy lifestyles, risk, how to
prevent disease, diagnose, and treat cancer. We also have 140
peer-reviewed articles about this, so we have been doing research
for quite some time and I think we do a good job. We actually
collaborate with people here at Yale.
Chu
You do a great job Linda.
Linda
Thank you.
Chu
It is really remarkable the breadth of the services that you
provide.
Miller
Let's go back to the community outreach piece.
Linda
Sure.
Chu
There is no question that I think the National Cancer Institute is
mandated, the NCI designated cancer centers, to reach out to the
community and try to identify barriers that exist, especially for
minority and underserved populations as you have mentioned. That
really is an important goal because a lot of the minority and
underserved populations do not have the same level of access to
care, and as you mentioned, screening and early detection are a
huge part of it. Can you tell us a little about some of the
projects that have taken place here at Yale and the State of
Connecticut?
Linda
We partner with Yale Cancer Center on clinical trial education and
awareness programs using the NCI's cancer clinical trials education
series. We continue at this point to provide resources to
support programs at Yale, such as the Yale Cancer Center lecture
series, the Cancer Center Symposium, and other events. Did
you want me to talk about other state agencies that we interact
with?
Chu
Maybe just more specific programs in terms of trying to enhance
breast cancer screening, or as you mentioned, cervical cancer
screening efforts.
Linda
Working with Yale and the community we work with federally
qualified health centers through breast and cervical early
detection programs that have been funded by the CDC. We work and
interact with them, and Yale, because some of the federally
qualified health clinics go to Yale for followup for breast and
cervical cancer. We also do the clinical trials education
series, as I mentioned a moment ago, and we are working with Dr.
Kevin Kelly on a treatment committee.
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We go to the Yale Cancer Center lecture series and we bring NCI
materials and are there to answer questions and help in any way we
can. Through networking and working with other people, we
have also been able to identify other partners that we can work
with across the state. It is a win-win situation for us, the
Cancer Center and other entities in the state a well.
Miller
I want to go back to the other components of your research. Can you
give us one example of a project your group has worked on
recently?
Linda
NCI funds a lot of research, well, I should not say a lot perhaps
at this point in time, but they are still funding research. We have
an RO1 here at Yale where we are looking at using the 1-800-4CANCER
line. We have just finished two studies looking at our
callers with regards to physical activity and fruit and vegetable
consumption. We have just done our final accrual and we came
out of the field about 2-1/2 weeks ago. We are now working
with the federally qualified health centers to work with their
populations of African American, Spanish speaking, Hispanic, and
Latinos in New Haven doing, again, fruit and vegetable consumption
and physical activities. We are just now getting through the
focus groups, and talking to key staff as to how they think things
should be done. We will do four projects there, and we will
do two more in 2010 using the 1-800-4CANCER line. So, that is an
RO1 we are working on. We are also working with Mashantucket
people at tribal nation, here at Yale, and that finishes at the end
of this month. We looked at making recommendations to the NCI about
the materials that we have and how they can be adapted for Native
American audiences. We are also looking at a survey that we have
done with health care providers and how they talk with and treat
the Native American population here in the State.
Chu
Is there much difference in the needs of the Native Americans as
opposed to Caucasian Americans?
Linda
I think there is, and I think it is how they view information and
how information is written and at what level it is written. When we
talk about doing a focus group, or a support group, the Native
American community does not look at that; they talk about 'talking
circles'. It is very enlightening and it is really a
wonderful experience for my staff and me to be able to work with
them because they are so eager to work with us. They are
really terrific collaborators and partners. We are helping a
population that is not easy to get to through some collaboration
that we have had through Yale Cancer Center. We have been able to
identify that population and work with them, and it has been
very-very rewarding.
Miller
Along those lines, your program has been in Connecticut for
essentially 30 years at this point, and it is one of the first, in
your career, what are some of the changes
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that you have seen in terms of the ability of the National Cancer
Institute, at Yale for example, to get the message out. Are we
doing a better job?
Linda
I think we are. The technology for one makes it so much
easier. I mean think back to before the internet, how were we ever
able to do what we do? Just getting funding, for instance, so that
we could stay alive has changed a lot, but I think we have become
much more knowledgeable about the needs of our callers and the
needs of the general public. Things have changed. Again, the
internet, that explosion has changed the way people get information
and there is a lot of information on the internet about cancer for
instance, as you know, but it is not all as it should be. Our
callers will call, and they have gotten all this information from
the internet. They look at the unproven methods and have to
sift through that. We are able to help them identify what is
correct, and what is not correct, what they should think about
perhaps, and what they should perhaps do, or what the next steps
may be. Our research has changed a lot too. We have worked
with people that we have known, that I have met at breast cancer
committee meetings for one, one of our researchers that I
work with, and a grant came up and I picked up the phone and called
them and said, can I meet with you, and we did, and we have done
several RO1s. We have done a Donahue. We have done
digital divide projects, so we have done a lot and the
relationships that we have helped immensely.
Chu
Linda, for those who are just joining the program, can you repeat
the number that people can access to get on to the Cancer
Information Service.
Linda
For any information that you would like, please call 1-800-4CANCER
and that would be 1-800-422-6237. We are available from 9
a.m. to 4:30 p.m. local time. We have information specialists
in English and in Spanish, and we would love to have you call us
and hope that we can help you.
Miller
On the internet, how do people access information?
Linda
www.cancer.gov and look for
the icon that is a live help, then you will be able to get to us
through the internet, again at www.cancer.gov
Chu
Linda, it is great as always to have you with us. It is
amazing how quickly the time goes, but we look forward to having
you back on a future show and give us an update on where things
stand with respect to the Cancer Information Service.
Linda
Great, thanks so much for having me. It has been a pleasure.
Chu
You have been listening to Yale Cancer Center Answers and we would
like to
thank our guest Linda Mowad for joining us this evening.
Until next time, this is Dr. Ed Chu from Yale Cancer Center wishing
you a safe and healthy week.
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If you have questions for the doctors, or would like to share
your comments, go to www.yalecancercenter.org
where you can also subscribe to our podcast and find transcripts of
past programs. Next weekend, Ed and Ken will discuss the
latest information on clinical trials for breast
cancer. I am Bruce Barber and you are listening to the WNPR
Health Forum from Connecticut Public Radio.