Native Navigation Presenters: Kimberly Rooks-Crawford, Walking Forward Program & Tinka Duran, Great Plains Tribal Chairmes Health Board What is one of the most important part of the sessions? 1. Need to ensure at least 20 persons attend. 2. Allow time for persons wanting to share their personal stories. 3. Having a large room. 4. Dot know/not sure 5. Dot want to answer Need to ensure... Allo 1
Partners: Native American Cancer Research Corporation (Navigators: Lisa Harjo, Rose Lee, Denise Lindstrom and Audrey Marshall), Pine and Denver, CO Rapid City Regional Hospital (Navigator: Kim Crawford) and Great Plains Tribal Chairmes Health Board (Navigator: Tinka Duran), Rapid City, SD Intertribal Council of Michigan, Incorporated, (Navigators: Amanda Leonard and Mark Ojeda-Vasquez) Sault Saint Marie, Mount Pleasant, MI Comanche Nation (Navigators: Bonita Harjo and Stacy Sanford), Lawton, OK Investigators: PI: Linda Burhansstipanov, MSPH, DrPH; Co- Investigators: Linda U. Krebs, RN, PhD, AOCN, FAAN, Brenda F. Seals, PhD, MPH, Noel Pingatore, MA, Daniel Petereit, MD, Shinobu Watanabe-Galloway, PhD, and Valerie Eschiti, RN, PhD. In the beginning. The Walking Forward Program was initiated in 2002 under the National Cancer Institute s Cancer Disparities Research Partnership Program at the Rapid City Regional Hospital in South Dakota to address the high cancer mortality rates among American Indians in western South Dakota. 2
In the beginning. The Northern Plains Comprehensive Cancer Control Coalition and the Northern Plains Tribal Cancer Data Initiative was initiated to address the cancer health disparities of the 17 tribes of the Northern Plains. Mission of the NPCCCP and NPTCDI The mission of the Northern Plains Comprehensive Cancer Coalition is to improve the cancer health status of American Indians in the Northern Plains region (CDC funded). The Northern Plains Tribal Cancer Data Initiative is researching the cancer disparities among Northern Plains American Indian communities by improving the quality, accessibility, and usability of cancer data (OMH funded). 3
2004-2007: Barriers to Cancer Care A community survey conducted by the Walking Forward staff among 984 American Indians in western SD revealed three predominant barriers to health care in this region, including lack of transportation, distrust of providers and higher costs associated with treatment, such as gas, food and lodging. 4
Patient Navigation Services 2004-Walking Forward implemented navigation services at the hospital assisting American Indian cancer patients with logistical, emotional and social support during and after their treatment to overcome identified barriers to cancer care. This also includes providing access to assistance with transportation, food and lodging. NNACC & Walking Forward In May of 2008, Linda Burrhansstipanov, MSPH, DrPH (NACR) joined forces with Daniel Petereit, MD Radiation Oncologist, Principal Investigator for the Walking Forward Program to help bring education and navigation services to the Native communities in 3 states, now 4 and probably still growing! 5
NNACC Native Navigators and the Cancer Continuum Sponsor: National Institutes of Health Principal Investigator: Linda Burrhansstipanov MSPH, DrPH, Grants Director Native American Cancer Research Corporation (NACR) Pine, CO Sub-Investigator: Daniel Petereit, MD Dept. of Radiation Oncology Cancer Care Institute Rapid City Regional Hospital, Rapid City, SD NNACC The South Dakota sites to date: Rapid City-Tinka Duran, Great Plains Tribal Chairmes Health Board, NPCCCP/NPTCDI Pine Ridge-Kim Rooks-Crawford, Walking Forward Program 6
NNACC Education Modules Family Fun Event #1 Overview of Cancer Healthy Diets Physical Activity Environment & Cancer Lung Cancer Breast Cancer Cervical Cancer Colon Cancer Prostate Cancer NACES Palliative Summary Family Fun Event #2 NNACC Education Modules Family Fun Event-Invite the community to participate in a fun event involving games, door prizes, meal and incentives while gathering baseline data using an ARS system. Rapid City is not required to do consent forms, Pine Ridge is required to by the OST RRB. I use this opportunity to explain what the project is about and ask them to commit to 24 hours of education or 12 classes. 7
NNACC Education Modules Get on the Path to Colon Health Native American Cancer Research (NACR) 3022 South Nova Road Pine, CO 80470-7830 Phone: 303-838-9359; Fax: 303-838-7629 Native American Cancer Survivors Network 1-800-537-8295 http://www.natamcancer.org Colon Cancer in Indian Country Is not a death sentence Can be prevented Is more common today than among our ancestors Native Survivors Honor Dance, Quality of Life through Roots of Strength conference (NACR and Native People s Circle of Hope) 09-23-06 Denver, CO Get on the Path to Colon Health Native American Cancer Research 800-537-8295; http://www.natamcancer.org 1 NNACC Education Modules Interactive Activity: Bear and Coyote 10 items Cancer 100 Overview of Cancer (Burhansstipanov) Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 73 Bear of Truth vs. Baby Coyote Trickster (10) 1. A tumor the size of a pea usually takes about 3 years to develop Coyote / False 2. About 25% (1/4) of all cancers are inherited from your parents. Coyote / False Cancer 100 Overview of Cancer (Burhansstipanov) Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 74 8
NNACC Education Modules 5. Breast Cancer Risk Factors and Protective Behaviors The shield in these slides represents your protection against things that may make you more susceptible to cancer (i.e., cancer risks) The larger the holes and the more number of holes in the shield, the less likely it is to protect you from cancer or other health problems Get on the Path to Breast Health Native American Cancer Research 800-537-8295; http://www.natamcancer.org 118 NNACC Education Modules Cancer risks that damage her shield of protection include: 1. Being a woman 2. Growing older 3. Personal history of breast cancer 4. Personal history of another type of cancer 5. Hereditary risk (e.g., BRCA1, BRCA2) 6. Family history 7. Sedentary life style 8. Over recommended body weight by 15-20 pounds (high fat / calorie diet) 9. Drinking equivalent to more than 7 alcoholic drinks in a week 10.No birth children 11.No breast feeding longer than 1 year The shield in these slides represents your protection (shield of health) against things that may make you more susceptible to cancer (cancer risks) The larger the holes and the more number of holes in the shield, the less likely it is to protect you from cancer or other health problems NOTE: the web page version is animated for breast and CRC 9
Rapid City Site Summary Family Fun Event Summary of Findings The 24-hour American Indian Community Workshop Series conducted with MOA- [Oglala Lakota College, He Sapa Center, Rapid City, SD from October 2010 through current]. The purpose of project was to increase American Indian community members knowledge about cancer. Twenty-four hours of education workshops were conducted in partnership with Oglala Lakota College He Sapa Center. The workshops included topics about prevention (healthy diet, exercise, environmental exposure to contaminants, tobacco prevention and use), early detection, diagnosis and treatment, quality of life and surviving cancer and palliative (comfort) care and end-of-life. This project was also to increase the community s awareness of local Native Navigators who teach the workshops. These Navigators are available to help individuals take part in early detection screening and other supportive care for those diagnosed with cancer. More than 300 individuals took part in the project. Average pre-workshop knowledge scores were 39% and the average post-workshop knowledge scores were 63%. This was an increase in knowledge of 24%. Pine Ridge Site Summary Family Fun Event Summary of Findings The 24-hour American Indian Community Workshop Series conducted with MOA-O [OST Health Educator Coordinator, Porcupine, SD from October 2010 through January 2011] The purpose of project was to increase American Indian community members knowledge about cancer. Twenty-four hours of education workshops were conducted in partnership with OST Health Educator Coordinator. The workshops included topics about prevention (healthy diet, exercise, environmental exposure to contaminants, tobacco prevention and use), early detection, diagnosis and treatment, quality of life and surviving cancer and palliative (comfort) care and end-of-life. This project was also to increase the community s awareness of local Native Navigators who teach the workshops. These Navigators are available to help individuals take part in early detection screening and other supportive care for those diagnosed with cancer. We had a total of 316 participants in the project with 148 females and 167 males. 10 participants elected to get further screening and some of the participants had previously been diagnosed with cancer. Average pre-workshop knowledge scores were 28% and the average post-workshop knowledge scores were _68%. Congratulations. This was an increase in knowledge of _40%. Partners: Native American Cancer Research Corporation (Navigators: Lisa Harjo, Rose Lee, Denise Lindstrom and Audrey Marshall), Pine and Denver, CO Rapid City Regional Hospital (Navigator: Kim Crawford) and Aberdeen Area Tribal Chairmes Health Board (Navigator: Tinka Duran), Rapid City, SD Intertribal Council of Michigan, Incorporated, (Navigators: Amanda Leonard and Mark Ojeda-Vasquez) Sault Saint Marie, Mount Pleasant, MI Comanche Nation (Navigators: Bonita Harjo and Stacy Sanford), Lawton, OK Investigators: PI: Linda Burhansstipanov, MSPH, DrPH; Co-Investigators: Linda U. Krebs, RN, PhD, AOCN, FAAN, Brenda F. Seals, PhD, MPH, Noel Pingatore, MA, Daniel Petereit, MD, Shinobu Watanabe-Galloway, PhD, and Valerie Eschiti, RN, PhD. 10
Successes and lessons learned There is a need to provide: Small incentives/gift cards (NPCCP Community Grant) Food and/or light refreshments (persons may be diabetic/going through treatment/s). Allow time for persons wanting to share their personal stories Need to address the outlying communities. Walking Forward Navigation Today In 2010, we were given permission to set up offices in Indian Health Service hospitals in: Rosebud, SD Pine Ridge, SD Sioux San-Rapid City, SD 11
Walking Forward Navigation Model Actual Navigated Patient Numbers Total numbers of patients navigated by site: 1. RCRH-417 2. Pine Ridge-226 3. Rosebud-144 4. Cheyenne River-200 5. Rapid City-250 12
Collaboration & Partnerships 2011-Walking Forward partnered with Gundersen- Lutheran, who were recipients of an Avon Foundation grant, to bring their mobile mammography unit to the Pine Ridge reservation. We identified the following sites to set up the mammography unit and provide cancer education: Kyle, SD Wanblee, SD Porcupine, SD Red Shirt Table, SD Batesland, SD Collaboration We completed screenings and education over a four day week with August 15 th and 16 th at the Kyle Health Clinic, 17 th at the Porcupine Health Clinic and the 18 th at the Wanblee Health Clinic. Screening numbers were: 133 Mammograms & breast exams. 61 members completed cancer screening education. 13
Collaboration We will be continuing our screening and education events in the following communities in September: Wanblee, SD-2 days Red Shirt Table, SD-1 day Batesland, SD-1 day Navigation from Screening- Treatment Education:1-2 hour modules Cancer Screening for screenable cancers (Breast, Cervix, Colon, Prostate) Navigation 14
Navigation from Screening to Treatment With our presence in the 3 Indian Health Service Hospitals: Allow us to make screening appointments. Access Electronic Health Records. Follow screenings. Follow-up with abnormal results. Navigate patients through the health systems. Close the cracks that sometimes do occur. Future Community Work Now that we ve begun to hold screenings and education workshops in the communities, perhaps we can begin to address the barriers to health care that because of scarce resources, have hindered so many tribal members, who unfortunately, sometimes present with late stage cancers. 15
Walking Forward and the Great Plains Tribal Chairmes Health Board are active on: Cheyenne River Reservation- Pine Ridge Reservation Rosebud Reservation Rapid City Native American community 17 tribes in the Northern Plains What is one of the most important part of the sessions? 1. Need to ensure at least 20 persons attend. 2. Allow time for persons wanting to share their personal stories. 3. Having a large room. 4. Dot know/not sure 5. Dot want to answer Need to ensure... 7% Allow time for... 85% Having a large... 0% Don t know/not... 7% 0% Don t want to... 16
Lila Pilamaye Thank You Kim Rooks-Crawford, Community Cancer Educator Walking Forward, John T. Vucurevich Regional Cancer Care Institute Phone: 605-391-7909 kcrawford@regionalhealth.com Tinka Duran NPTCDI Project Coordinator Great Plains Tribal Chairmen's Health Board/Northern Plains Tribal Epidemiology Center Phone: 605-721-1922, ext. 104 or 1-800-745-3466 tinka.duran@gptchb.org 17