Community-Engaged Health Research in Indian Country

Transcription

1 Community-Engaged Health Research in Indian Country Cynthia Gamble, MPH Tlingit Tribal Liaison, Partnerships for Native Health Lonnie A. Nelson, Ph.D. Eastern Band Cherokee Assistant Professor, WSU College of Nursing Initiative for Research and Education to Advance Community Health Partnerships for Native Health

2 Initiative for Research and Education to Advance Community Health (IREACH) Consists of programs that comprised University of Washington s Center for Clinical and Epidemiological Research, a unit in the School of Public Health Transferred to WSU September 2015 Presence in Spokane and Seattle Faculty and staff of about 60 people Core interest is community-based health research

3 Partnerships for Native Health: Vision Diverse AIAN constituents and academic partners working together in real-world settings to improve health through research, education, and technical assistance and by focusing on community strengths. WSU - Health Sciences Spokane Initiative for Research and Education to Advance Community Health (IREACH)

4 Partnerships for Native Health: Engagement and Research Urban and reservation-based AIAN populations across the lifespan Physical and mental health, disease prevention, health services ~160 partners: tribal colleges, AIAN organizations, and tribes (30 active sites) Community-based action research 56 projects funded since 2007 Training and education

5 Our Community Partnerships We bring: Some economic benefit Services they would not normally receive Cutting edge interventions E.g., HPV Colorectal cancer screening Communities receive training and education Specific competencies (e.g., Motivational Interviewing) Community capacity building Affecting attitudes toward research Providing Native health professionals as community

6 Outreach Events Locally: UW Spring and Winter Pow-wows United Indians of All Tribes Pow-wow Guest Lectures at UW School of Medicine and School of Public Health Native American Women s Dialogue on Infant Mortality Life Center Northwest Society of Nephrology Social Workers Staff training for: Seattle Indian Health Board Chief Seattle Club

7 Outreach Events Nationally, we participate in events with Native Organizations Tribal Self Governance Consultation Conference National Indian Health Board National Congress of American Indians American Association for Public Health Society for the Advancement of Chicanos and Native Americans in Science (SACNAS) National Urban Indian Health Conference Association of American Indian Physicians

8 Student Development and Mentorship Identify, recruit and hire Native students Provide work experience in health research Professional development and mentoring Encourage them to engage in dissemination of findings APHA, NCAI, AAIP, Indigenous Research Conference, etc. Provide opportunities for specialized training Encourage pursuit of advanced degrees

9 Partnerships for Native Health: Mission We conduct community centered research, training, education, and outreach to improve the health and quality of life of American Indian and Alaska Native People.

10 Health Inequities and Research Wikipedia: Gaps in the quality of health and healthcare across racial, ethnic, and socioeconomic groups. Health Resources and Service Administration Population-specific differences in the presence of disease, health outcomes, or access to health care. Research is curiosity with a structure and function.

11 Social Determinants of Health Social determinants of health are conditions in which people are born, grow, live, work and age. They are shaped by the distribution of money, power and resources at global, national, and local levels. Personal characteristics Family circumstances Culture Poverty Education Health care Unfair policies Physical environment Housing Food security Child development Social support Transportation Discrimination Working conditions Healthcare services

12 Fundamental Health Disparity: AIAN Life Expectancy

13 Examples of Our Projects Project: Genetics of Smoking and Nicotine Dependence in American Indians Project: Enhancing Cervical Cancer Prevention Strategies among Native Women and Adolescents Project: Using Digital Stories and Text Messages to Improve Colorectal Cancer Screening in Native Americans Project: Cerebrovascular Disease in 12 American Indian Tribes Project: Deliberative Methods to Determine Biobanking Governance Preferences Project: Modified DASH Diet Intervention to Improve Blood Pressure Control

14 Examples of Our Projects Project: Incentive-based Interventions for American Indian and Alaska Native Adults with Alcohol Dependence Project: Suicide Prevention in Urban Native Youth Project: Suicide Prevention in Rural Native Young Adults Project: Family-based Intervention using Motivational Interviewing to Reduce Stroke Risk Project: Text Messaging to Improve Colorectal Cancer Screening Project: Childhood Factors and Obesity among Native Adolescents Project: Outreach and Culturally-tailored Interventions for Cognitive Impairment and Alzheimer s Disease in Native Elders

15 Genetics of Smoking Objectives Examine genetic and non-genetic factors associated with populationlevel differences in patterns and prevalence of smoking in 2 AI sites Methods Random sample of 426 tribal members in South Dakota 210 tribal members in Phoenix area Measure CYP2A6 and nicotine metabolism Cytochrome P450 2A6 (CYP2A6) Cotinine (COT) Trans-3'-hydroxycotinine (3HC)

16 Enhancing Cervical Cancer Prevention Purpose 95% of cervical cancer cases caused by HPV. Evaluate feasibility and acceptability of self-sampling kits, prevalence and risk factors for HPV infections Methods 1,025 Southwest and Northern Plains women aged years self-collected vaginal samples and surveys Samples tested for high-risk HPV subtypes Attitudes towards HPV self-sampling identified Correlates of high-risk HPV prevalence identified

17 Cervical Cancer Prevention Over 95% reported self-sample was easy to collect Over 60% preferred HPV self-sampling to receiving Pap test from a clinician Over 20% were positive for high-risk HPV (HPV 51) High-risk HPV profile different in AIANs than other U.S. women and poorly covered by vaccines High-risk HPV subtype prevalence peaked in late 20s and declined with age Promising strategy to engage with women who do not get regular screening

18 Cerebrovascular Disease Objectives Estimate prevalence of subclinical (silent) cerebrovascular disease with MRI Estimate prevalence of physical and cognitive impairment Describe association of MRI findings with impairments, lifestyle, cultural, and biological factors Methods 13 IRBs: universities, tribes, Area Indian Health Service 1,033 participants from 12 tribes in 3 states 3 hour battery: MRI, EKG, cognitive/physical exam, surveys, blood tests

19 WSU - Health Sciences Spokane Initiative for Research and Education to Advance Community Health (IREACH) Burden of Subclinical Cerebrovascular Disease Infarcts 3 mm (Overall: Males = 32%, Females = 34%)

20 Family Intervention to Reduce Stroke 3 states, 12 tribes Point of care lab tests Digital stories Immediate feedback on risk level Talking Circle and action plan Text message reminders 1-month follow-up/check in Assess change in risk factors at 1 year post

21 Family Intervention to Reduce Stroke Goal was 360 households, 453 enrolled now 1 year post treatment assessments ongoing Excellent community reception Potentially scalable for other communities If found effective At $20,000 per stroke hospitalization, likely costeffective even with minimal efficacy

22 Approaches to Economic Analysis Cost Benefit Analysis Costs and benefits measured in monetary units Cost of Tx < Savings benefit? Cost Effectiveness Analysis Quantity OR Quality of life gained Cost per year of life saved, OR per unit of improved quality? Cost-Utility Analysis Quantity AND Quality of life gained (QALYs, DALYs)

23 Measurement in Economic Analysis Cost: $$$$ Health Related Quality of Life Euro-Qol 5D-5L SF-36 or SF12 Service Utilization Billing Records and EMR Usually for a period before, during, and after treatment

24 Economic Analysis Problem and Potential Solution Identification from Clinical Areas, Population Specific Interests, or the General Policy Process Measurement of the Effectivenessof a Treatment, Program, or Intervention Study Design Epidemiology Randomized Trials Modeling Statistical Analysis Uncertainty Copyright 2007, The Johns Hopkins University and Kevin Frick Valuation Economic Theory Personal and Societal Valuation Instruments from Economics and Decision Sciences Validity and Reliability Time Discounting Inflation Accounting for Possibilities Offered by Technological Change Cost Theory of what to measure Primary Data Collection Methods Incorporating Secondary Data Incremental Cost- Effectiveness Ratio or Net Benefit Calculation Theory of howto calculate Theory of howto use in decision making Sensitivity (or what if ) Analyses Inference Choosing which Program to Fund or Treatment to Recommend Politics Ethics

25 Native Investigator Program 2 year training period 5 Native Investigators each period Targeted didactic instruction Distributed model Intensive mentoring Interdisciplinary faculty 2 pilot projects, major proposal Goal is to train independent AIAN researchers

26 Outcomes 48 AIAN MDs/PhDs/JD from 36 tribes in 10 cohorts to date 86% retained over 2-year training cycle 8 tenured at major research universities $65 million in NIH grants Principal Investigator or Co-Principal Investigator on 100 funded grants; 65 from federal agencies R01, K career awards, Diversity Supplements, foundation, state, regional, Indian Health Service 350 peer-reviewed publications

27 Satellite Centers

28 IREACH and Partnerships for Native Health Cynthia Gamble Lonnie Nelson