Addressing American Indian Health Disparities: The American Indian Health Research & Education Alliance Native Research Ambassador Program
- The PCORI Strategic Plan
- Clinical Effectiveness and Decision Science
- Dissemination and Implementation
- Evaluation and Analysis
- Healthcare Delivery and Disparities Research
- PCOR Infrastructure & Innovation
- Our Vision & Mission
- Financial Statements and Reports
- The PCORI Strategic Plan
- Board of Governors
- Methodology Committee
- Authorizing Law
- Evaluating Our Work
- PCORI's Advisory Panels
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Past Opportunities to Provide Input
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
- Past Opportunities to Provide Input
American Indians (AI) are at high risk for developing chronic medical conditions, including hypertension, diabetes, and kidney disease, and yet are among the least represented people in healthcare research.
In 2019, Christine Daley, PhD, SM, MA, formerly of the University of Kansas School of Medicine, now Chair of the Department of Community and Population Health and Co-Director of the Institute for Indigenous Studies at Lehigh University, received a PCORI Engagement Award to develop a one-year training program for American Indian community members. The program was designed to offset mistrust of the medical system and encourage community participation in patient-centered outcomes research (PCOR).
Daley and her team ultimately created the American Indian Health Research and Education Alliance (AIHREA) Native Research Ambassador Program (N-RAP). The program provided foundational training in PCOR, comparative clinical effectiveness research (CER), and community-based participatory research (CBPR) methods, grant writing, and the ethical conduct of research.
New Directions for Research
Daley reflects that the project has taught her and her team "to focus on new directions for research, particularly related to mental health and youth," and has had "a positive impact on communities, providing new ways for tribal communities to work with researchers."
An initial cohort of 20 Native Research Ambassadors was trained through the program to spearhead future research efforts on behalf of their individual communities. The eventual goal is for N-RAP to become a lasting program that fosters enduring community stakeholder engagement in research.
This project has taught us to focus on new directions for research, particularly related to mental health and youth [and it has had] a positive impact on communities, providing new ways for tribal communities to work with researchers.Christine Daley, PhD, SM, MA Lehigh University College of Health
Celebrating Self-Advocacy and Community Collaboration
N-RAP was designed to provide tangible training on how to translate community-engaged research findings into real world settings.
Ryan Goeckner, MA, doctoral candidate in the Department of Anthropology at The Ohio State University and member of the project team, explains that CBPR “empowers community members to advocate for themselves and focus on community-led decision making.”
Goeckner notes that this is particularly important for American Indian communities that already connect through pan tribal organizations, but may be geographically and socioeconomically diverse, and have unique needs locally. The hope is that involvement in community-based research will ultimately help make participants’ “health goals and vision of the future for their communities,” a reality, adds Goeckner.
What's Happening at PCORI?
The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.