ENGAGEMENT AMONG URBAN NATIVE COMMUNITIES AND HIV CLINICAL RESEARCH - PowerPoint PPT Presentation

USING A PARTICIPATORY MODEL OF ENGAGEMENT AMONG URBAN NATIVE COMMUNITIES AND HIV CLINICAL RESEARCH SITES: A CASE STUDY Michaela Grey (Diné), MPH Katie Osterhage, MMS Jessica Velcoff, PhD Matt Ignacio (Tohono O’odham), MSSW 2013 USCA – New Orleans, LA September 10, 2013

Welcome! Introductions  NNAAPC & Legacy Overview  Cause & Effect Activity  HIV in Indian Country  NAEHCR Project Overview  Project Findings  Participatory Action Research (PAR)  NAEHCR Engagement Plan  NAEHCR Successes! 

Welcome! Introductions  Name  Where you are from  Role in community or agency

NNAAPC and Legacy

NNAAPC: The National Native American AIDS Prevention Center (NNAAPC) helps organizations that serve Native communities to plan, develop and manage HIV/AIDS prevention, intervention, care and treatment programs.

NNAAPC: Our Vision:  Indigenous communities free of HIV where health, wellness and balance are celebrated Our Mission:  To eliminate HIV/AIDS and confront related health and social determinants that negatively impact American Indian, Alaska Native, Native Hawaiian and Indigenous peoples.

Legacy Project  Works nationally with communities that have been underrepresented in HIV prevention, treatment, and clinical research through engagement, education, and scientific investigation.  www.hanc.info/legacy/.

What is HIV Clinical Research? Clinical trials take place all over the world and have led to many breakthroughs, such as: Preventing the spread of HIV 1. Helping people living with HIV/AIDS to stay well 2. longer Determine the safety and effectiveness of drugs 3. and vaccines

HIV Clinical Research Clinical Trial Networks funded by NIH:

HIV Clinical Research What does HIV Clinical Research do? Benefit the Individual  Prevent Infection  Delay Disease Benefit the Community  Reduce Transmission  Healthier Communities

Activity: Cause and Effect

HIV in Indian Country Estimated Diagnoses of HIV Infection among Adult and Adolescent American Indians/Alaska Natives by Transmission Category and Gender, United States (CDC, 2011)

HIV in Indian Country: Context  In 2011, 37% of Native women who acquired the virus did so through injection drug use.  This is the highest percentage of IDU acquisition among women of all races and ethnicities.  The number of new HIV infections among American Indian or Alaska Native people has increased by 8.7% from 2007 to 2010.  This is the greatest percent increase in new infections when compared to all other races/ethnicities.

HIV in Indian Country: HOW DOES HIV/AIDS AFFECT THE NATIVE COMMUNITY?  Native Hawaiians/Other Pacific Islanders and American Indians/Alaska Natives had the 3rd and 4th highest rate of new HIV infections, respectively. By the end of 2008, the rate was 22.8 per 100,000 persons for NHOPIs and 11.9 per 100,000 for AI/ANs.  Of persons who were diagnosed with HIV, AI/ANs had that shortest overall survival time, with only 88% living longer than 3 years.  Of persons who were diagnosed with HIV, almost 30% progressed to an AIDS diagnoses in less than 12 months.

HIV in Indian Country: HIV TESTING Despite high rates of new HIV infections, 59% of American Indian/Alaska Natives have never been tested for HIV. Over 70% of Native Hawaiians and Other Pacific Islanders have never been tested for HIV.

National HIV/AIDS Strategy : High Impact Prevention! Supported by 2010 National HIV/AIDS Strategy:  Components of strategy are…  Scientifically Proven (ART, P4P , Drug Tx., CTRS)  Cost-Effective  Scalable (wide-spread)  Biomedical interventions  Targeted towards those at highest risk  In geographic areas “hardest hit”

Legacy of Research “ The use of disease as a strategy of colonization, a history of unethical research practice, and ongoing substandard medical treatment has left many AI/AN individuals and communities distrustful .” (Duran &Walters, 2004) “People want collaborative research that is meaningful to the local communities…They don’t want ‘helicopter’ research anymore where people from the outside the tribe come into the community, collect their data, and then fly out with only the dust left. There is no data, no results and no discussion of what the research was about.” (Tom-Orne, 2012)

Legacy of Research History and analysis of poorly conducted research:  Barrow Alcohol Study (1979)  Havasupai Diabetes Study (2004)  National Geographic Genetics Study (2006)

NAEHCR Project: NAEHCR seeks to increase awareness and involvement of urban Native communities in HIV clinical trials Seattle San Francisco (2011) (2012) Chicago Denver (2011) (2012)

NAEHCR Project:  Building meaningful relationships between:  Legacy Project and NNAAPC  Local CRS, Native community and NNAAPC  Local urban Native community, CRS and NNAAPC  Not recruiting for clinical research!

NAEHCR Project:  Goal: Help increase awareness of HIV clinical research among Native communities  Goal: Help increase awareness of Native communities among researchers  Ensure that Native community members have the opportunity to participate in HIV clinical research and benefit from biomedical breakthroughs  Rooted Community-Based Participatory Research (CBPR) and Participatory Action Research (PAR)  Key: Establishing reciprocity and sustainability

Participatory Action Research Research and action must be done ‘with’ people and not ‘on’ or ‘for’ people.

Kemmis and Mc Taggert (1988)

• One-to-One Meetings Eliciting Stakeholder with Leadership, Buy-in & Feedback • Public Kick-Off Event • Formative and Mixed Methods Evaluation Process Evaluations, • Qualitative and Quantitative data • Community Stakeholder involvement Consultants, • Program & Research throughout process • Design, Collection, Interpretation, & Dissemination

• Clinical Research Reciprocal Education Training, • Cultural Humility Training • National Native Meetings and Events American HIV/AIDS Awareness Day, • F2F Meetings • Engagement Long Term Planning & Resources Template, • Research Brochures, • Publications

PAR Activity

NAEHCR Engagement Template

NAEHCR Findings: Phase One (Denver and Seattle)  2 Focus Groups: 16 ppl. Denver, 6 Seattle  4 Individual Interviews with CRS: 2 Denver, 2 Seattle  115 Surveys: 54 Denver, 61 Seattle Phase Two (Chicago and San Francisco)  2 Focus Groups: 14 ppl Chicago, 17 ppl San Francisco  5 Individual Interviews CRS staff, 2 Chicago, 3 San Francisco  121 Surveys: 61 Chicago, 60 Chicago

NAEHCR Findings: HIV is NOT Widely Discussed

NAEHCR Findings: Barriers to Effective Engagement  Stigma toward PLWHA  Stigma toward LGBT/Two-Spirit Community  Mistrust of medical providers  Silence about sex Facilitators of Effective Engagement  Strong Sense of Community  Desire to Address HIV/AIDS Disparity  Emphasis on Community Health and Wellness Components of Effective Engagement  Straight Forward Approach  Intergenerational  Gender representation and diversity  Consistency/Visibility, “come to us.”  Native Representation/Leadership  Incorporate culture  Incentives

NAEHCR Successes!  Continued funding beyond the  Empowered community pilot phase members to speak about clinical research  Formal relationship between researchers & local Native  Finished Guidance document community for conducting another project similar to NAEHCR  Increased participant retention in clinical trials (San Francisco &  Discussing NAEHCR Project & Denver) treatment advances removed the stigma associated with HIV  Standard Cultural Humility Training now exists  CAB membership  Option for linkage to medical care

Denver Community Advisory Board Member

Questions and Comments?

THANK YOU!!! Katie Osterhage, MMS Michaela Grey (Dine), MPH CBA Specialist Project Manager mgrey@nnaapc.org kosterha@fhcrc.org (720) 382-2244 x304 (206) 667-2821 Matt Ignacio (Tohono Jessica Velcoff, PhD O’odham), MSSW jvelcoff@gmail.com Project Manager mignacio@nnaapc.org (720) 382-2244 x316

Evaluation http://goo.gl/zJxVqG