Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research 1 A Community-Based Collaborative

Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research

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A Community-Based Collaborative to Develop Cancer

Related Activities for Tribes in Michigan

Laurie DeDecker, RNDeDecker Consulting

Noel Pingatore, BSInter-Tribal Council of Michigan

Linda Burhansstipanov, MSPH, DrPHNative American Cancer Research


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The Need for Cancer Prevention Education Programs

in Michigan


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Mistaken Beliefs

• Cancer risk evaluation process is “looking for zebras”– Due to lack of understanding that everyone

has a risk for cancer

• Native Americans aren’t at risk for inherited forms of cancer– Due to lack of understanding of issues

surrounding European admixture

Age at Death

Primary Site< 20

20 - 29

30 - 39

40 - 49

Total < 50

Colon 0 0 2 8 10

Rectum 0 0 0 3 3

Pancreas 0 0 0 2 2

Other Gastrointestinal Tract and Digestive System 1 2 1 7 11

Lung and Bronchus 0 0 2 25 27

Breast 0 0 5 8 13

Ovary 0 1 2 1 4

Kidney and Renal Pelvis 0 0 0 2 2

Total 1 3 12 56 72

Age at Cancer Death Native American - Michigan


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State-Based Cancer Initiatives

• Michigan Cancer Consortium– Michigan’s Comprehensive Cancer Plan

• Public/Private partnership• Acts as funding mechanism for many community based

activities in state

– ITCM is member, but not active

• Prior to SoE 2004 meeting there were no state-based cancer prevention or control projects with a focus on Native Americans (BCCCP and tobacco initiatives are funded separately from other state cancer control initiatives)


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MDCH Special BRFS Data

• Over sampled Native Americans

• Findings from data were not being used

• Now being used for funding applications


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In the Beginning…


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Where it all Began

6th Annual SoE Meeting – September 2004Phoenix, AZ– Inter-Tribal Council of Michigan shares Pink

Shawl Project – DeDecker Consulting attends on behalf of

state to learn about cancer risk &prevention efforts

– Native American Cancer Research is asked to assist in developing cancer risk & prevention activities


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The PartnersInter-Tribal Council of Michigan (ITCM)• 501(c)(3) Nonprofit consortium of12 federally recognized

tribes and tribal agencies in Michigan

• The mission of ITCM is to plan and implement programs that help to elevate the health status of Indian families

• ITCM provides technical assistance, resource and program development, and advocacy within a variety of health and human services programs

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The Partners• DeDecker Consulting (DDC)

– Female owned independent contracting company

– Provides nurse consultant services with a focus on cancer genetics, cancer risk assessment, community based colon cancer screening, research, public health and health disparities


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The Partners• DeDecker Consulting (DDC)

– Expertise includes development and facilitation of community-based & state wide programs/organizations, meeting facilitation, grant writing and coordination with a focus on the underserved and cancer genetics

– Current focus is on Native American cancer issues


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DDC Philosophy“Since you cannot do good to all, you are to pay special attention to those who, by accidents of time, or place or circumstance, are brought into closer connection with you…”

- St. Augustine

In the ideal world everyone would die peacefully in their sleep of old age

No one should die of cancer because they are forgotten


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The Partners

Native American Cancer Research (NACR)

– Native-operated 501(c)(3) community based nonprofit

– They work to reduce Native American cancer incidence and mortality, and to increase survival from cancer among Native Americans


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The Partners

Native American Cancer Research (NACR)

– To accomplish this they implement cancer primary prevention, secondary prevention, risk reduction, screening (early detection), education, training, research, diagnoses, control, treatment, support, quality of life, and/ or studies of cancer among Native Americans


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And so the Work Began…


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Collaborative Cancer Projects Collaborative Cancer Projects in Michiganin Michigan

20042004

No state No state funded funded projects projects specific to specific to NANASoE SoE Meeting Meeting PhoenixPhoenix

20052005

ITCM BRFSITCM BRFSNACR NACR

Consult on Ca Consult on Ca Risk AssessmentRisk AssessmentNACR NACR

GENA® & Colon GENA® & Colon Ca SessionsCa SessionsCRC Barriers CRC Barriers ProjectProjectKomen Grant Komen Grant SubmittedSubmitted

20062006

Komen Komen Funding Funding ReceivedReceivedCRC SBIR CRC SBIR SubmittedSubmittedBCCCP BCCCP PresentationPresentationCRC follow-up CRC follow-up interventioninterventionTribal Data Tribal Data MeetingMeeting

20072007

Komen Project Komen Project Finished & Finished & Navigators Navigators TrainedTrainedCRC SBIR CRC SBIR ResubmittedResubmittedTech-GENA® Tech-GENA® SBIR Submitted SBIR Submitted


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ITCM BRFSS Results

• The ITCM Steps to a Healthier US project began conducting the Native American specific BRFSS.

• Developed a process over time

• Data now used to further Tribal Health Programs and track progress

• Respect for tribal data


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NACR Visits Michigan• May 2005

– Linda B’s first visit• Funded by state genomics program

• Educational meetings presented over 2 days to ~45 tribal clinic staff Sault Ste. Marie and Mt. Pleasant

– Mt. Pleasant/Nimkee Session Data» 80%of staff had no prior cancer genetics education» Only 40% of staff felt confident identifying patients

who would benefit from cancer genetics evaluation» Only 20% of staff had ever made referral for cancer

genetics evaluation


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NACR Visits Michigan• October 2005

– Linda B’s second visit• Initial goal was to provide Genetics

Education for Native Americans (GENA®) content to tribal colleges in Michigan

• Funded by NACR/GENA®

• Educational meetings with GENA® and Get on the Path to Colon Health content presented over 3 days to tribal elders, clinic staff and tribal college students and staff in Sault Ste. Marie & Keweenaw Bay


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Linda B’s Second Visit (cont.)

• Bay Mills Community College – Genetics Education for Native Americans (GENA®)

– Students & Staff

• 48% of attendees had no prior genetics education of any type


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Linda B’s Second Visit (cont.)

• Sault Tribal Clinic – Get on the Path to Colon Health for the Clinic Staff– 65.2% of attendees had no prior education

regarding CRC genetics– Pre-session 4.5% of attendees knew that Northern

Plains region of IHS had highest mortality rate for NA males

– Post-session 100% of the attendees reported that session provided useful information and the session helped them understand CRC


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Komen Funding• Collaborative Grant (ITCM, NACR, DDC)

submitted to and funded by Komen Foundation

• Funding to tailor Get on the Path to Breast Health content to Michigan tribes– Added new modules on breast cancer family

history and environmental factors in breast cancer– Module completed in 2007– NACR provided training to Navigators at 3 tribal

clinics


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Colorectal Cancer (CRC) Barriers

• State funding 2005– Arose out of collaboration between DDC and

state cancer program– Funds given to ITCM to document barriers to

CRC screening in tribal communities

• State funding 2006– Funds available for CRC barriers intervention

in one tribal community


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CRC Project Overview

• Year One – Identify Barriers to CRC

• Conducted Community Focus Groups

• Two groups of men over age 50 and two groups of women age 50 and over

• Conducted Provider Interviews


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Year One Findings

• We identified a great need for further education on CRC, screening methods, terms and guidelines

• Focus groups became an intervention• Identified a need to equip providers with

culturally specific, easy to use educational materials

• Developed a Community Fact Sheet• Developed a report for providers


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Comments when asked why people don’t get screened

• “I have not seen very many pamphlets or anything on colorectal cancer, so maybe that’s one way [to increase screening]”

• “You’ve really got to explain what is going to happen”

• “Should be part of a routine visit. To ask about whether they’ve been screened or to offer the test.”

• “Show them a chart or movies.”


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Comments on Providers

• “One of the concerns I have is the turn-over in doctors every two to three years.”

• “They don’t have patience with us because we’re Indians.”

• “I have no complaints at all. When I need them they’re there.”

• “It’s not always the best that’s out there but it’s hard to recruit people to come to a rural setting.”

• “I think pretty much that our health care is really good, but then I come back from a long way when there was no health care at all.”


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Additional Comments

• The men agreed that providers do broach the topic of cancer. “These guys will remind you [to get screened].” “We’ll get a letter or flier. “They’ll have a cancer awareness month.

• About ¼ of the women stated that their health care providers do discuss colorectal cancer screening. The other ¾ stated that they do not.


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Selected Findings from Providers

• What are the community’s attitudes towards cancer? • The providers stated that the community’s attitude

towards cancer is “variable.” One provider stated that the community “is concerned” and that most people want to have good health. The providers stated that two common attitudes prevail: prevention and denial.

• “I don’t want it, I’d like to prevent it.”• “If I don’t come in [to the clinic] I won’t have to know

about it.” • One of the providers stated that it is not a dialog

between provider and patient until a person is worried or when there is a diagnosis of cancer.


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Barriers encountered when trying to determine a patient’s risk for CRC

• Patients reporting inaccurate health and/or family history• Patients not divulging specific information to the

provider, “You have to ask the question three different ways”

• Fear on the part of the patient, “They don’t want to know”• Asking the patient the right question• Patients sometime complete a written health

questionnaire that they may not complete accurately, or they may not understand it properly

• Patients’ fear of procedures• A family history of colorectal cancer may encourage or

inhibit people in seeking screening• With a positive FOBT they may or may not get screened


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Community Handouts

Do people in your community talk about cancer?♦ Not as much as they should. It’s hush, hush.♦ It was not talked about as much as it should have been.♦ Only if they know somebody that’s got it or died from it.♦ I think about cancer but I don’t really talk about it.♦ In my family we'll discuss it because we’ve had several people with cancer

What are your opinions on the screening procedures forcolorectal cancer?♦ They should give more education [on using the FOBT kit]because I had three of those things and never sent them in.♦ It’s like going to the dentist in a way. I don’t like the needlewhen they start but after the tooth is numb it don’t bother me.


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Community Handouts• What are your opinions on the screening

procedures for colorectal cancer?

♦ They should give more education [on using the FOBT kit] because I had three of those things and never sent them in♦ It’s like going to the dentist in a way. I don’t like the needle when they start but after the tooth is numb it don’t bother me♦ After I got it done I was happy I did.

• Back of the handout includes Health Facts, Guidelines and contact information


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Provider Training• In order to address the need for easy to

understand education materials; we provided a training with the providers and clinic staff on using the “Get on the Path to Colon Health” curriculum developed by Native American Cancer Research (NACR).

• Feedback from the providers and staff was terrific and appreciative.

• Laminated Copies are now in each of the exam rooms .

• www.natamcancer.org


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Year Two CRC Activities

• Conduct Focus Groups with Community Members, Leaders and Elders specifically to:– Receive input on an Intervention Plan– What types of materials/ activities would be

appropriate– Distribution process, location, activities– Preferred or recommended messengers:

health staff, CHR’s, community events


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Tribal Data Meeting

• First of it’s kind in the state

• Conceived out of collaborative efforts of ITCM, DDC, State Cancer Registry

• Brought together tribal representatives, ITCM, IHS and State Cancer Registry

• Outcomes: The Sault Ste Marie Tribe of Chippewa Indians completed the Linking Process just this past summer


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Annual State-Wide BCCCP Meeting

May 2006

• Collaboration between DDC, ITCM & State BCCCP program resulted in Session on Native American women’s cancer prevention issues– Included session highlighting collaborative

efforts between ITCM, NACR, DDC


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Other Outcomes of the Collaboration2005

– Sharing of Pink Shawl project, disseminated internationally

– Sharing of culturally specific tobacco prevention & control materials

2006 – ITCM more actively involved in Michigan Cancer

Consortium– ITCM asked for input into new state Comprehensive

Cancer Plan2007

– ITCM team invited to attend American India/Alaska Native CRC Dialogue meeting - Portland, OR

– ITCM participated in the Comprehensive Cancer Leadership Institute as a Michigan Team Member - Los Angels, CA


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SBIR Funding Applications2006

– DDC submitted SBIR application to NIH with focus on development of CRC risk assessment educational materials for Michigan tribes

• Collaborative effort between, NACR, ITCM, DDC, and Bridges Consulting

• Scored, but not high enough to be funded

2007– SBIR CRC application re-submitted– NACR submits SBIR Tech-GENA® application

submitted to expand educational content on a GENA® module

• Focus group to be held in Michigan if funded


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Where Do We Go From Here?

The sky is the limit!


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Ongoing Collaborations

All 3 partners are committed

to continuing to work to obtain funding for future cancer projects


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For More Information Contact:

Laurie DeDecker (269) [email protected]

Noel Pingatore ((906)[email protected]

Linda Burhansstipanov (303) 838-9359 [email protected]

mailto:[email protected]



Documents

Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research 1 A Community-Based Collaborative