Ann Chester, PhD Cathy Morton- McSwain , MS Summer Kuhn, MPH Merge McMillion , MS

1. Community Based Participatory Research Opportunities through HSTA Knowledge Brokers (Community Research Associates) Ann Chester, PhD Cathy Morton-McSwain, MS Summer Kuhn, MPH Merge McMillion, MS Sara Hanks, MPHc

2. Objectives • Engage clinicians and scientists in Community Based Participatory Research with HSTA • Understand roles and function of Community Research Associates as knowledge brokers • Determine ways to collaborate to reduce health disparities and increase health literacy in West Virginia

3. NCATS: Science of Community Engaged Research: Future Directions – Chris Austin MD, Director of NCATS • Diagnostics and therapeutics • Behavioral interventions • Develop, demonstrate, and disseminate innovative methods and technologies

4. NCATS and Community Engagement Across the Translational Spectrum • Observation to point of care intervention (T1) • Identify most important research questions • Recruit best researchers • Build partnerships • Complementary funding for research studies • Bridge gap between fundamental science researchers and patients • Clinical and translational research (T2-T3) • Help develop relevant and practicable research protocols • Foster community participation and recruiting research participants for clinical trials • Increase collaboration and communication within the CTSA networks and between key stakeholders (e.g., academia, public/private entities, and communities) • Community health and population research (T4) • Adoption of demonstrably useful interventions (i.e. dissemination) • Adherence • Interface with research partners including PCORI, Collaboratory, AHRQ, etc.

5. The Power of HSTA to Engage Community and Researchers • Over 17 years of NIH support • About $5 million • $28M history of funding with: • NIH • HHMI • Benedum • Private Foundations • State • Policy Changing Capacity

6. A New Work Force for Community Based Participatory Research • Adolescents can be vectors for change in their communities • Students are able to conduct CBPR in the most inaccessible communities • The HSTA families offer new insights into public health issues • The infrastructure is in place and unique to West Virginia

7. HSTA Infrastructure • Community Based Organization • 159 Volunteer Board Members • 800 9th -12th grade students in 48 high schools • After school club setting • Complete annual research projects • 67 teachers • 14 Field Site Coordinators • 4 Community Research Associates (Knowledge Brokers)

8. HSTA Students • 30% African American • 63% Financially Disadvantaged • 74% First in their families to go to college • 83% Rural • 67% Female

9. Community Research Associates (CRAs) • Background in high school education • Understanding of experimental design and statistics • Ability to relate scientific information to high school teachers and students • Ability to help scientists relate to HSTA and community

10. What do CRAs do? • Build partnerships between HSTA and researchers to promote community based research • Work with teachers and students on implementing research protocols • Act as liaison between community and research • Disseminate and translate knowledge between researchers and HSTA communities and vice versa • Facilitate IRB process

11. Fitting the Needs of Many Resources State Legislators Community Stakeholders Policy change Identify Issues Network Methods HSTA CRAs Researchers Communities HSTA Clubs Mentor HSTA Students/teachers Translate Gain a new perspective Disseminate knowledge Empower to change Participants

12. HSTA Student Research Projects • Students complete annually • Timeline for completion: • August – October – Proposal • October – January – Proposal Approval • Upon Proposal Approval – Implementation and Data Collection • May – HSTA Symposia – Presentation of project • Work with students on projects of mutual interest

13. What can HSTA provide? • A pool of 800 ethics trained students • Trust of locals • CRA assistance • IRB assistance • IRB approved lifestyle survey • Teacher oversight • Access to hard to reach populations • Translation and dissemination of research to community • Opportunity to recruit future healthcare providers

14. Potential Data Points

15. What do we need from you? • Research ideas • Experimental design • Materials and supplies • Instruments needed for data collection • Guidance on data collection • Data access for student analysis and presentations • HSTA participant recognition for any publications • Mentoring and role modeling

16. Partnership Proposal Timeline • August • Project Idea Development with CRAs • Joint Governing Board Approval • September • HSTA student/club recruitment • October - January • Work with student on student’s research proposal • January – April • Begin implementation upon approval • Data analysis • May • Student Symposia

17. Current Research Collaborations • Stress reduction – Dr. Julie Brefczynski-Lewis • Kidney Disease – Dr. Rebecca Schmidt • Ginseng harvesting – Dr. Jim McGraw • HSTA students as coaches of physical activity behavior changes • Lifestyle and Physical Activity Investigation – Dr. Bob Branch, University of Pittsburgh • Various Projects - NIOSH

18. My First Patient Research Opportunity • Collaboration between HSTA, School of Medicine, School of Dentistry, School of Pharmacy, Center for Cardiovascular and Respiratory Services, Engineering and the Davis College • Incorporates individualized health assessment and coaching into HSTA yearly activities • Hypothesis: HSTA students from 26 counties are change agents for their communities starting with themselves • Two Phase Project • Phase 1: July 2014 – May 2015 – HSTA Students • Phase 2: July 2015 – May 2016 – HSTA Families • IRB in progress now

19. Set-Up • HSTA students will be assessed for various health indicators while on campus for Summer Institute, July 2014 • Students will select a goal to work towards throughout the school year • Will receive personalized coaching based on self-prescribed goal throughout the school year from team of professional students (Medical, Dental, Pharmacy, etc.) • Post assessment will occur at a HSTA event on campus in March 2015

20. Assessments • Dental Health • Blood pressure • Heart rate • Respiratory rate • BMI/Body Fat • Waist Circumference • Hemoglobin A1C • Lipid Profile • Fasting Glucose • Endothelial function • FMRI

21. NIH funding PAR’s for partnering with HSTA • R01 PAR-13-130: Understanding and Promoting Health Literacy • Dissemination and Implementation Research in Health • R03 PAR-13-056 and R21 PAR-13-054 and R01PAR-13-055: identify, develop, evaluate and refine effective and efficient methods, systems, infrastructures and strategies to disseminate and implement research-tested health behavior change interventions, evidence-based prevention, early detection diagnostic, treatment and management, quality of life improvement serves, and data monitoring and surveillance reporting tools into public health and clinical practice settings that focus on patient outcomes.

22. HSTA Health Research Collaboratory Address WV Health Disparities Communities across WV HSTA Researchers • Enable • capabilities to test effectiveness of • Understanding • Dissemination • Adoption • Policy change

23. Final Thoughts • Opportunity for research in hard to access communities • Unprecedented access and ability to influence policy • Adolescents as workforce for CBPR • Empowering adolescents as vectors for change • Mentoring future public health practitioners, clinicians, and researchers • Unique infrastructure for community engagement • Funding Opportunities are available NOW

24. How to Get Involved • Contact Cathy Morton-McSwain 304-847-2372 mmortonm5@gmail.com