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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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The Need for Cancer Prevention Education Programs
in Michigan
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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)
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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In the Beginning…
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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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Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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And so the Work Began…
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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.”
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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.”
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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.
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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.
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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.
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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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
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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Where Do We Go From Here?
The sky is the limit!
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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Ongoing Collaborations
All 3 partners are committed
to continuing to work to obtain funding for future cancer projects
Native Cancer Collaborations: DeDecker Consulting, Intertribal Council of Michigan and Native American Cancer Research
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For More Information Contact:
Laurie DeDecker (269) 948-4340woodsedge@iserv.net
Noel Pingatore ((906)632-6896noelp@itcmi.org
Linda Burhansstipanov (303) 838-9359 lindab@natamcancer.net
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