Community Engagement & Research

1. Community Engagement & Research Don Nease, MD Director, CE & Research Core Director, SNOCAP

2. Specific ObjectivesCCTSI 2.0 • Objectives: The goal of this Program is to infuse and elevate patient-centered, community-engaged research across the translational research spectrum to strengthen the links among research discovery, bidirectional translation, and implementation. By engaging the community in the continuum of medical research, new discoveries can be efficiently and safely translated to provide the right care, to the right patient, at the right time.

3. Governance

4. Governance CCTSI Principal Investigator CE&R Core Director Deputy Director PACT Executive Committee Project Coordinator Admin. Assistant Implementation Staff PACT Committees: Training & Education Data Liaisons Ethics/Community Consults Pilot Grants CFPHECommunity Engagement Director

5. Approach Through a robust resource portfolio, the CE&R Core will work to: • Build on our current successes in community engagement to advance the CCTSI’s broad mission and goals. • Drive innovation and collaboration in methods, processes, tools, and resources across the spectrum of translational research. • Emphasize team-based approaches in research including the involvement of patients, families, health care providers and other community partners in all phases of the work. • Champion reshaping career development pathways for researchers conducting clinical and translational science.

6. Approach CE&R Core Partnerships • ThePartnershipofAcademicians&CommunitiesforTranslation(PACT) & PACT Council • CommunityResearchLiaisons • ColoradoFoundationforPublicHealthandtheEnvironment • CommunityEngagementCoreImplementationTeam& Scientific Staff • Practice Based Research Networks

7. Approach Existing Programs/Services • CE&R Pilot Grant Program • Supports community-academic partners in pilot studies that strengthen relationships and produce preliminary data for future competitive grant applications • Example: ComillaSasson, MD • Emergency Physician funded in a pilot grant to develop a community partnership around cardiac arrest and resuscitation. Pilot work has led to further funding, multiple publications and national leadership • Provided the model for PCORI Pathways Awards

8. Approach Existing Programs/Services • Education andTraining forAcademic Researchers • IntroductiontoCBPRforCommunity-AcademicPartnerships • ColoradoImmersion Training inCommunityEngagement • ResearchthroughCommunity-AcademicPartnerships: LessonsLearned

9. Approach Existing Programs/Services • Education and Training Programs for Communities • Academic Immersion • Introduction to CBPR for Community-Academic Partnerships • Frontiers in Medical Science • Mini‐Med School

10. Approach Existing Programs/Services • Boot Camp Translation for Patient Centered Outcomes • The CE&R Core will work with communities and providers to transform evidence-based recommendations into language and programs that are accessible and understandable to the diverse communities in Colorado, thereby increasing uptake of those recommendations and improving patient outcomes. • Methods are being refined, used and disseminated in 2 current PCORI funded grants and 1 AHRQ funded grant

11. Approach New Programs/Services • Community Consults • This new initiative is intended to infuse community input into the early design of T1-T2 clinical research. The CTRC medical directors will identify and invite participation of PIs (including KL2 awardees) who are proposing investigator-initiated CTRC projects. • The CE&R Director, PACT Council, and Community Liaisons will assemble 6 to 10 community members or patients whose interests are aligned with the proposed research.

12. Approach • The PI will provide an overview of the research field and community members will provide feedback about the value of the research to their community, suggestions about patient-centered outcomes that would have meaning to them, comments on study design, ways to make the study more attractive to participants, and ethical concerns. • This will provide community and patient input into a research study early in its developmentso that it may be most responsive to the needs of the patients and community. It will also build a cadre of community members available for Community Consults. • Program will be evaluated closely

13. Approach New Programs/Services • Development & Dissemination of Formal Training Curriculum for Community Research Liaisons • Introduction to CBPR for Community-Academic Partnerships • Qualitative Methods Training and Development • Clinical Trials and Research Education for Communities • CITI Basic course in human subject protections and health information privacy and security • REDCap(Research Electronic Data Capture) • Boot Camp Translation for Patient-Centered Outcomes: Facilitator Training

14. Metrics: Education/Training • Nearly 100 people have completed the Introduction to CBPR training. • More than 20 community members have visited the Anschutz Medical Campus as part of the “Academic Immersion Program”. • More than 100 community members attended “Frontiers in Medical Science”. • We have developed two educational offerings that are offered at AMC for course credit. • A total of 58 faculty, postdoctoral students, research team members and graduate students have completed the “Immersion Training”.

15. Metrics: Publications/Presentations • Community liaisons have featured their work in 35 presentations/publications. • Twelve formal presentations at national and state meetings on our novel administrative structures that enable meaningful community participation in the research enterprise.

16. Metrics: Publications/Presentations • Nine presentations and a manuscript about Colorado Immersion Training (CIT). • The first three cohorts of CE Pilot Grantees have yielded more than 18 publications, manuscripts and presentations. • Eleven manuscripts have been published on PACT/CE work.

17. Metrics: Community Partnerships • The annual “Research Exchange and Poster Session” has attracted nearly 500 participants and featured more than 140 poster presentations over the past four years. • More than 400 people participated in the ECER Conference each year. • The CE Core sponsored the Denver Metro Regional Science Fair where more than 600 students presented 500 projects and 150 volunteer faculty and graduate students judged and volunteered.

18. Metrics: Funding • The PACT Council and CE Core have submitted seven grants with our community partners, resulting in $2.1 million in funding. • To date, 14 CIT participants have secured $3.4 million in external funding support for projects with CE as a major component. • The PACT Council has approved five cohorts of pilot awards, totaling 52 projects and $1,122,787in funding. An initial investment of $681,530 for the first three cohorts has yielded approximately $5.2 million in additional funding support (7.6 ROI).

19. Metrics: Pilot Grants • A manuscript about the Pilot Grant program was published in Progress in Community Health Partnerships: Research, Education, and Action, special issue on the "Science of Community Engagement”. • PCORI modeled their new “Pipeline to Proposal Awards” program after the CCTSI CE Pilot Grant Program and Colorado (CFPHE and PACT) was chosen as the PCORI Intermediate Funder for the Western Region of the USA.

20. Metrics: Pilot Grants • Early evaluation findings of the CE Pilot Grants program provide evidence of the "mutually-reinforcing nature of CBPR as an approach that supports both the translational research process, as well as the partnership development process that serves as the necessary foundation for this work.” • The PACT Pilot Grant Review Committee (PGRC) has worked to garner a membership with nearly equal numbers of academic and community reviewers, and to collaboratively craft an RFA that is community-friendly and encourages meaningful community engagement within a true CBPR framework.

21. National CTSA Consortium Involvement • CTSA CE annual meeting • SG4 leadership • Bioethics • PBRN’s • Association for Clinical Research Training (ACRT) Educator Subcommittee • Dr. Spero Manson chaired meeting of 6 CTSAs to plan collaborative outreach and capacity-building efforts with American Indian - Alaska Native communities

22. Questions for EAC • How can the CCTSI best ensure active and substantive community participation in priority setting and decision making across all phases of clinical and translational research and in the leadership and governance of the CTSA  program, and maintain this with declining NIH funding/resources?