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

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

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

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.

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

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

HSTA Infrastructure Community Based Organization 159 Volunteer Board Members th -12 th 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)

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

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

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

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

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

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

Potential Data Points

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

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

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

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

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

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

NIH funding PAR’s for partnering with HSTA R01 PAR : Understanding and Promoting Health Literacy Dissemination and Implementation Research in Health R03 PAR and R21 PAR and R01 PAR : 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.

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

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

How to Get Involved Contact Cathy Morton-McSwain