Northwest Portland Area Indian Health Board

Indian Leadership for Indian Health

Cancer Navigation and Survivorship

Eric Vinson (Cherokee) Project Coordinator

Northwest Tribal Comprehensive Cancer Program

May 2, 2018

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• Founded in 1973 • 43 Federally Recognized Tribes in OR, WA, ID

• Mission: To assist Northwest tribes to improve the health status and quality of life of members tribes and

Indian people in their delivery of culturally appropriate and holistic health care.

Northwest Portland Area Indian Health Board

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NPAIHB Member Tribes

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NPAIHB Organizational Chart

Northwest Diabetes Project NTCCP& OHA TPEP

National Diabetes Project

NTCCP & WTDPKerri Lopez,

Director

Northwest Tribal Epidemology CenterVictoria Warren-Mears,

Director

NPAIHBJoe Finkbonner,

Executive Director

Northwest Portland Area Indian Health BoardExecutive Committee Members

Kerri Lopez, Project Director Eric Vinson, Project Coordinator Antoinette Aguirre, Prevention Coordinator Tom Becker, MD, PhD, Medical Epidemiologist NW Tribal Cancer Coalition • Formed in 1998 • Tribal Cancer Coalition 2016-17

• 3 meetings • 134 participants • 23 Tribes represented

Northwest Tribal Comprehensive Cancer Program

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Trainings

Clinical Cancer Update •60 participants (2018) •CEU accreditation

Risky Business Training •25 participants (2015)

Tobacco Cessation •Basic Tobacco Intervention Skills– AI/AN EBI •14 participants (2015)

Activities

• Tribal site visits Cancer 101 Grant Writing Development tribal action plan Participation in tribal prevention, screening and

education activity • Phone and email technical assistance Dissemination of resource materials

• Tribal Cancer Plan Implementation Funding $189K for 113 Tribal Cancer Activities (2004-2013)

• Inflatable Colon "Kiki” Supporting NW Tribal CRC Education Activities

• Twenty Year Northwest Tribal Comprehensive Cancer Control Plan

• Northwest Tribal Cancer Resource Guide

• Cancer 101 • Cancer Fact Sheets • Appointment Companion • Tribal Cancer Action Planning

NTCCP Tools and Resources

Evaluation of Cancer 101: An Educational Program for Native Settings. Hill TG, Briant KJ, Bowen D, Boerner V, Vu T, Lopez K, Vinson E. J Cancer Educ. 2010 Feb 10.

The past, present, and future of comprehensive cancer control from the state and tribal perspective. Miller SE, Hager P, Lopez K, Salinas J, Shepherd WL. Prev Chronic Dis. 2009 Oct;6(4):A112.

Cancer Care of American Indians and Alaska Natives and Other Racial Groups Enrolled in Public and Private Insurance Plans. Ramsey S, Zeliadt S, Blough D, Lopez K, Buchwald D. Poverty & Public Policy. 2010 Vol. 2: Iss. 1, Article 3.

ISSUES

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Barriers to Care

• Multifaceted Problem • Geographic Isolation • Independent Healthcare Systems • Low Health Literacy • Patient ― Provider Communication • Available Financial Resources

• $3,136/person versus $8,517/person

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2014 Federal Bureau of Prison’s expenditure: $6,400 Source: The Federal Bureau of Prisons’ Reimbursement Rates for Outside Medical Care, Evaluation and Inspections Division 16-04 June 2016

Indian Health Service Cancer Capacity

• IHS funding • Resources and

funding to programs • Data • Screening and

Treatment Referral process

• Staff turn over

• State / federal funding reimbursement

• Access to care • Cancer as a

priority • Tribal advocate

Challenges to Cancer Care

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• 1998 Data for Native Americans are not shown separately in this analysis but currently are being evaluated for future reports1

• 1999 “the incidence rate for all sites combined for American Indians/Alaska Natives are 194.9 per 100,000” 2

• 2007 Male Cancer Incidence All sites 406.9 per 100,0003 Female Cancer Incidence All sites 334.8 per 100,0003

• 2016 Both sexes Female Cancer Incidence All sites 385.6 per 100,0004 Male Cancer Incidence All sites 416.2 per 100,0004 Female Cancer Incidence All sites 367.2 per 100,0004

Why is cancer important?

1Wingo, Phyllis A., et al. "Cancer incidence and mortality, 1973-1995."Cancer 82.6 (1998): 1197-1207. 2Wingo, Phyllis A., et al. "Annual report to the nation on the status of cancer, 1973-1996, with a special section on lung cancer and tobacco smoking." Journal of the National Cancer institute 91.8 (1999): 675-690. 3Espey, David K., et al. "Annual report to the nation on the status of cancer, 1975–2004, featuring cancer in American Indians and Alaska Natives." Cancer 110.10 (2007): 2119-2152. 4Ryerson, A. Blythe, et al. "Annual Report to the Nation on the Status of Cancer, 1975-2012, featuring the increasing incidence of liver cancer." Cancer 122.9 (2016): 1312-1337.

SEER 1988-1994 Cohort1

•Among people who develop cancer, the five-year survival rate is more than 10 percentage points higher for persons who live in affluent census tracts than for persons who live in poorer census tracts. This gradient is seen in all racial and ethnic groups with the exception of American Indians/Alaskan Natives. Even when census tract poverty level is accounted for, however, African American, American Indian/Alaskan Native, and Asian/Pacific Islander men and African American and American Indian/Alaskan Native women have lower five-year survival than non-Hispanic Whites.

CRC 5 yr Survival 1998-2007 (ID, OR, WA)2

•AI/AN 0.4727 (0.4190, 0.5338) 95% CI •NHW 0.5627 (0.5627, 0.5825) 95% CI

What are the Outcomes?

1 Ward, E., Jemal, A., Cokkinides, V., Singh, G. K., Cardinez, C., Ghafoor, A. and Thun, M. (2004), Cancer Disparities by Race/Ethnicity and Socioeconomic Status. CA: A Cancer Journal for Clinicians, 54: 78–93. doi: 10.3322/canjclin.54.2.78 2 Petersen, P. S. (2011). Colorectal Cancer Survival Among American Indian and Alaska Native People in the Pacific Northwest: A Thesis. Oregon Health & Science University, Portland, OR.

Importance of “Closing the Loop” on Outside Procedures •All clinics in this study had some degree of difficulty obtaining and placing outside reports from specialists, hospital stays and pathologists back into the charts. Pathology reports were the most commonly missing. For some clinics just getting started on VistA imaging, scanning lagged behind leaving reports in “to scan” piles and thus not available for review. However, quite often the reports were never returned to the clinic from outside providers. From: Page 81 of Northwest Tribal Cancer Navigator Project Final Report at: www.npaihb.org/epicenter/project/navigator_reports_publications_media_materials

Documentation from cancer centers doesn’t make it into patient records

• Cancer navigation The odds of receiving a definitive diagnosis within

365 days of abnormal cancer related finding for navigated participants was 3.6 times non-navigated1

• Case management • Tribal Health run support groups • Relationship with cancer centers

Successes in addressing Cancer Survivorship

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1Warren-Mears, V., Dankovchik, J., Patil, M., & Fu, R. (2013). Impact of patient navigation on cancer diagnostic resolution among Northwest Tribal communities. Journal of cancer education, 28(1), 109-118.

CANCER NAVIGATION

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Northwest Tribal Navigation

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• 2002: President’s Cancer Panel convenes on the Yakama Reservation Directed by Harold Freeman, MD

• 2003: Pilot project funded by the Center to Reduce Cancer Health Disparities (CRCHD) of the National Cancer Institute (NCI)

• 2005: 5 year Project funded by NCI

• 2010: Grant funding ends Report at

http://deainfo.nci.nih.gov/advisory/pcp/archive/pcp02rpt/YakamaBook.pdf

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OUTREACH PATIENT NAVIGATION REHABILITATION

Abno

rmal

Fin

ding

Res

olut

ion

Initi

al C

onta

ct

Con

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e N

avig

atio

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Abnormal results/ Diagnosis Diagnosis Treatment Survivorship

General Framework of a Cancer Patient Navigator Program

NW Tribal Navigation Intervention

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• “Navigator” at tribal or IHS clinic Nurse or CHR Training in cancer screening, diagnosis, and

treatment

CLINIC Pap tests

Clinical breast exams Digital rectal exams

PSA tests Fecal occult blood tests

Colposcopies

Mammograms

Sigmodoscopies

PET scans

Cone biopsies

MRIs Surgeries

Chemotherapy

Physical therapy

Urology services

Photo: Lobby of Takopid Health Center, Puyallup Tribal Health Authority, Tacoma, Washington.

Patient+

Navigator

Volunteers,Transport,

etc

Surgeon

Primary Careat

Tribal Unit

Imaging Services

OncologistRadiologist

NW Tribal Navigation Intervention

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• Any clinic patient can work with the Navigator

• Navigator’s job is to keep the patient from getting lost

Issues Addressed During Encounters

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Other, 37%

Follow-up, 34%

Referral/Arranging services , 27%

Communicating w/ providers, 20%

Abnormal finding, 13%

Medications, 11%

Insurance, financial, transportation, 9%

0% 5% 10% 15% 20% 25% 30% 35% 40%

• Non-Navigated patients waited 115 days on average (median 42 days)

• Navigated patients obtained definitive diagnosis within 88 days (median 37

days) 3.6 times more likely to receive a definitive diagnosis

within one year of abnormal finding

Impact of Navigation

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• Tribal Cancer Navigators, NPAIHB Member Tribes and Staff

Acknowledgments

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CANCER SURVIVORSHIP PROGRAMS

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• Surveillance for recurrence • Monitoring for and managing psychosocial and medical late

effects • Providing screening recommendations for second cancers • Providing health education to survivors regarding their diagnoses,

treatment exposures, and potential late and long-term effects • Providing referrals to specialists and resources as indicated • Familial genetic risk assessment (as appropriate) • Guidance about diet, exercise and health promotion activities • Providing resources to assist with financial and insurance issues

Empowering survivors to advocate for their own healthcare needs

High Quality Survivorship Care

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From: www.asco.org/practice-guidelines/cancer-care-initiatives/prevention-survivorship/survivorship/survivorship

• www.mayoclinic.org/departments-centers/oncology/cancer-survivorship-clinics/overview

• rehabilitation specialists, psychologists, complementary and alternative therapy specialists, cancer education specialists, fertility specialists, sexual health experts, dietitians

• Cardio-Oncology Clinic. Discussing cancer treatment options with oncologists for

people at high risk of heart disease or existing heart disease

• Appointment request 800-446-2279

Mayo Scottsdale Survivorship program

Family Medicine physicians who have additional training in Integrative Medicine. They see patients in active treatment as well as those who have completed treatment.

Medical Oncology Social Workers • Women's Cancer: Brenda Casey, LCSW • (520) 694-0347 brenda.casey@bannerhealth.com • Bone Marrow Transplant: Kathleen Pickrel, LMSW • (520) 694-1885 Other Cancers: 4 Oncology Social Workers

uacc.arizona.edu/patients/support/team

U of A Cancer Center Survivorship program / Supportive Care

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• GWU Center for the Advancement of Cancer Survivorship, Navigation, and Policy smhs.gwu.edu/gwci/survivorship/casnp

• Memorial Sloan Kettering Cancer Center Resources for Survivors www.mskcc.org/experience/living-beyond-cancer/resources-survivors www.mskcc.org/cancer-care/patient-education www.mskcc.org/cancer-care/treatments/symptom-

management/integrative-medicine/herbs

• ASCO Cancer Survivorship Compendium www.asco.org/practice-guidelines/cancer-care-initiatives/prevention-

survivorship/survivorship/survivorship-compendium

Resources

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TOOLS

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The new Women’s Health Package! Part of iCare

Care Management Event Tracking (CMET)

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https://www.ihs.gov/icare/cmet/

• Tribal Contacts • Individual Assistance Programs Financial Assistance Other Assistance

• Breast and Cervical Cancer Programs • Program Planning • Programs that Assist other programs • Listing of Cancer Centers

Northwest Tribal Cancer Resource Guide

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• How to Use the Appointment Companion & Acknowledgements

• List of Provider Contacts • List of Medications • Questions to ask your healthcare team • Ways to Treat Cancer • Calendar • Dates to Remember • How to Find Your Way to the

Cancer Center • Notes/Journal • Resources

Appointment Companion

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FUN EVENTS

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Yakama Nation Relay on the Rez

Organized by Tobacco Coordinator Planned with Tribal Youth Council and

Cancer Survivorship Support Group Worked with schools for use of facilities

during day and overnight Fundraising went back into fund to

support those diagnosed with cancer and support for transportation and housing

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Confederate Tribes of Umatilla Basketball tournament

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HELIX — Griswold High is hosting the 11th annual Bouncin’ Cancer tournament on Dec. 28-29, 2017. The Grizzlies will host varsity games in their main gym. Echo and Ione girls and boys play at noon and 1:30 p.m., respectively, on Dec. 28, followed by Helix vs. Trout Lake girls and boys at 3 and 4:30 p.m., and Nixyaawii and South Wasco at 6 and 7:30 p.m.

All money raised goes to Your Friend Pamela Faye, which distributes funds to help with family expenses while fighting cancer. The event began in 2008 between Echo and Nixyaawii, and more than $60,000 has been raised over the past 10 tournaments.

From: http://www.union-bulletin.com/

Breast Cancer Awareness Bingo

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Salish Cancer Center

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Northwest Tribes Meet the Challenge

• Pap-a-thon • Pink Paddle Project • Aerobics Video • Pink Shawl • Mother daughter

tea/lunch • Golf tournament • Cancer awareness day • Cancer 101 • Great American Smoke

out • Men’s health day • Relay on the Rez

• Cooking classes/healthy eating • Just Move It • Tribal cancer coalition • Women and Wellness • Lifestyle Intervention Classes • Breast Cancer Awareness Bingo • Colorectal Cancer Poker Walk

Northwest Tribal Comprehensive Cancer Program Kerri Lopez (Tolowa), Project Director Eric Vinson (Cherokee), Project Coordinator Antoinette Aguirre (Navajo), Cancer Prevention Coordinator Tom Becker, MD, PhD, Medical Epidemiologist

Improving Data & Enhancing Access - NW (IDEA-NW) Project Sujata Joshi, MPH, Project Director

Phone: 503-416-3301 Email: klopez@npaihb.org

Contact Information

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