White Mountain Apache Tribe in partnership with Johns Hopkins University Translating Research to Community Interventions

1. White Mountain Apache Tribe in partnership with Johns Hopkins University Translating Research to Community Interventions Mariddie J. Craig, WMAT NARCH PI Raymond Reid, MD; Johns Hopkins University

2. White Mountain Apache Tribe White Mountain Apache • 15,000 tribal members • 1.6 million acres UTAH COLORADO ARIZONA NEW MEXICO Albuquerque Phoenix 32

5. GOAL 1 • To describe process for how tribal-university research findings have led to prevention interventions now used throughout tribal communities, the U.S. and world.

6. GOAL 2 • To describe evolution toward the Tribe directing its own research with technical assistance from JHU to solve priority public health problems.

7. GOAL 3 • To underscore the importance of continued tribal-university partnerships to train tribal researchers and health professionals in order to increase tribal capacity and autonomy in health research and administration.

8. GOAL 1 • From Research to Practical Interventions • From Local to Global Application

9. GOAL 1: Example 1ORS • 1970s: Many Apache children suffered from diarrheal disease and death at ~10 times the U.S. average • Collaboration with JHU introduced Oral Rehydration Solution (ORS) to homes by Apache outreach workers and effective treatment using ORS instead of IV fluids at hospitals

10. Diarrheal Diseases • Prior to 1980s, morbidity and mortality rates of diarrhea in Apache infants similar to third world. • 1980s: WMAT/JHU 5-year NIH grant to study & treat diarrhea. Comprehensive studies completed to describe the epidemiology of diarrheal diseases. • Oral Rehydration Solution (ORS) piloted for first time in US in Whiteriver to prevent dehydration in infants. Improved diarrhea treatment techniques developed. Greatly reduced morbidity & mortality. • Apache outreach workers trained by JHU taught moms and other careproviders to use ORT in home. This helped to reduce disease severity.

11. Diarrheal Dehydration Prevention From Local to Global • 1985: AAP established ORS as preferred treatment for US children with diarrheal dehydration • 1996: WMAT given award of recognition by WHO, UNICEF, CDC, USAID for contributions of preventing diarrheal deaths through use of ORS worldwide.

12. GOAL 1: Example 2Hæmophilus influenzæ type b • 1980s: Apache children from high rates of disease and deaths due to diseases caused by the Haemophilus influenzae b (Hib) bacteria. Many deaths were due to meningitis. • Many children also survived Hib meningitis with deafness, paralysis, and mental retardation. • No vaccine available prior to 1988 to prevent Hib diseases • Collaboration with JHU to introduce new vaccine to prevent disease

13. Haemophilus Diseases • 1982: high rate of Hib diseases noted in Apache babies--rates found to be 20-50 times higher in Apache babies than in US children. • Hib diseases include meningitis, blood infections, skin infections, pharyngitis, and others. Hib meningitis caused many deaths. • Many studies were conducted among Apache and Navajo before discovering a safe and effective vaccine (PedvaxHib) in a trial conducted 1988- 1990.

14. Hib Diseases: From Local to Global • This vaccine now used all over US and have been introduced to many parts of world. • Hib diseases virtually eliminated among Apache, Navajo, other Indian tribes and US general population.

15. Behavorial Health Projects Apache outreach workers home visitation interventions in partnership with JHU: • “Family Spirit” to promote positive health and behavior outcomes for teen mothers and offspring • “Living in Harmony” to reduce risk of post-partum depression among at-risk mothers • “Celebrating Life” and “Empowering Our Spirits” to reduce suicidal behavior among youth

16. GOAL 2 To describe evolution toward Tribe directing its own research with technical assistance from JHU Example: NARCH Research Projects • Preventing Pneumococcal diseases in Apache Families • Suicide prevention among Apache youth

18. GOAL OF NARCH Native American Research Center in Health The goal of the WMA-JHU NARCH is to build on history of successful collaboration to launch a unified research and training effort to transfer expertise from Johns Hopkins University to Apache tribal health leaders and budding Apache health scholars to conduct health research, compete for federal research grant opportunities, and hone skills to lead future health research and public health care delivery for the Tribe.

19. Significance of NARCH • NIH funds Tribe directly • Tribe sub-contracts to JHU for technical assistance • Overall PI is Apache (Mariddie Craig) • JHU Principal Investigators for research projects mentor Apache Co-Investigators & Research Assistants • Apache Co-Investigators develop skills to coordinate research, publish results and help Tribe compete directly for NIH grants

20. SAMPLE NARCHRESEARCH PROJECTS • Preventing Pneumococcal Diseases among Apache Families • 2. Employing Community Based Participatory Research Methods to Prevent Suicidal Behavior among White Mountain Apache Youth

21. Preventing Pneumococcal Diseases In Apache Families

22. Pneumococcal Diseases • Streptococcus pneumoniae • A bacteria: 90 different types. • Lives only in humans in the far back of the nose and mouth. • Causes pneumonia, ear infections, sinus infections, meningitis, blood infections. All age groups affected. • Prior to 2000, no vaccine available for babies to prevent pneumococcal diseases.

23. Invasive Pneumococcal Disease, Children <2 years old CDC, January 2000

24. Study Objectives • Undertake surveillance for pneumococcal disease (How are Apaches’ health affected by the pneumococcal germ?) • Determine pneumococcal clinical disease spectrum (What types of pneumococcal diseases do Apache people have?) • Assess pneumococcal vaccine coverage in at-risk adults (How many adults received the available pneumococcal vaccine?) • Identify barriers to vaccination and develop an intervention (If they didn’t get the vaccine, why not? How can we help?)

25. Pneumococcal Vaccine Trial • Prior to 1997, rates of pneumococcal diseases highest in babies and elderly. • Vaccine for babies evaluated 1997-2000 for protection against 7 types of pneumococcus known to cause almost all diseases. • Vaccine was found to be highly protective and safe. Pneumococcal diseases now rarely occur in babies. Ear infections greatly reduced. • Studies continue to learn more about disease transmission to find best method of protection for people of all age groups. • Same results now being noted in Australian Aborigines who have greater disease rates.

26. Adult Pneumococcal Diseases • Pneumococcal disease rates high in Apache adults • 3 times the rate seen in the general US population • Greater proportion of cases occur among young adults than in the general US population • Vaccine coverage among people with pneumococcal disease: • ~75% of cases are caused by types contained in the vaccine • 85% of cases did not receive the vaccine • Vaccine coverage in people at risk for pneumococcal disease: • Coverage in Apache elderly and in diabetics is high and much greater than the general US population • Coverage in most other high risk groups is lower than in the elderly and in some cases as low as 50% • Strategies are needed to vaccinate hard-to-reach high risk groups, such as alcoholics. Also, need to pursue assessment of new, better vaccines against pneumococcus.

27. Employing Community BasedParticipatory Research to Prevent Suicidal Behavior Among Apache Youth

28. History of Suicide Peaks forWhite Mountain Apache Tribe • Community concern since 1990 • Spikes in suicide completions among youth: • 1990-93 • 2001 • 2004 to present • Attempts among youth increasing?

29. Community Response toCurrent Problem • Tribe Established Suicide Prevention Coalition (2001). • Tribal Council Resolution legislating suicide registry for all tribal members (thoughts, attempts, completions) • 2005: Sought/Received NARCH III award with JHU to: 1) computerize registry system, 2) study youth attempters, 3) create interventions

30. WMAT partners with JHU • To build computerized database to enter registry data • To assist in data analysis • To assist in facilitating study of youth who make serious suicide attempts • To assist in adapting & applying lessons learned from study to identify prevention interventions and funding streams for implementation

31. Youth Suicide Prevention • JHU has trained 4 Apache Research Assistants to conduct study with youth attempters through self-report assessments and in-depth interviews. • Goal of study to determine: • Risk factors • Protective factors • Suicide severity • Treatment experiences and preferences • Medical history • Prevention intervention ideas

32. Youth Suicide Prevention • Tribe and JHU received SAMHSA grant to develop prevention interventions • Interventions under development: • Emergency Dept/Post-Attempt crisis intervention • Home-based life skills training with family based on American Indian Life Skills Curriculum (T. LaFromboise) • Elder-Youth mentoring activities • Youth-Elder driven media campaigns highlighting sacredness of life • Community awareness and education

33. GOAL 3 • To underscore importance of continued tribal-university partnerships to train tribal researchers and health professionals in order to increase tribal capacity and autonomy in health research and administration.

34. WMAT-JHU Training Initiative • Winter and Summer Institutes at JHU for Apache Scholars • More than 100 Apache Scholars have taken part between 2001 and present • Courses provide multidisciplinary training to address priority health problems for AI/AN populations • New 16-credit public health certificate in Native American health at JHU • Certificate is pipeline for Apache scholars to pursue degrees in public health, nursing and medicine at JHU • First WMA scholar graduated with MPH in 2007. Goal by June 2010: 3 Apache graduate/doctoral scholar; 20 certificate scholars; 100 additional institute scholars.

35. CONCLUSIONS • Importance of autonomy in research to future of tribes • Tribes must educate scientists so they can integrate cultural understanding into research designs and public health interventions • Tribes must develop capacity to compete for federal funding streams (NIH, CDC) to address priority health problems • Promoting training in health and research builds human capital of tribes. • Tribal-University relationships based on trust and mutual respect can expedite capacity building. • Solutions to tribal health disparities can be solved at home and shared with world.

36. THANK YOU FOR SHARING THE VISION!