Community Based Participatory Research

2. Community Based Participatory Research Bethany Hall-Long, PhD, RNC, FAAN Professor Nursing and Joint Faculty Urban Affairs, University of Delaware DE State Senator, District 10 Michael P. Rosenthal, MD Chair, Department of Family and Community Medicine, Christiana Care Health System Professor of Family and Community Medicine, Thomas Jefferson University

3. Community Based Participatory Research CBPR is a collaborative research approach Designed to ensure and establish structures for participation by communities affected by the issue being studied Includes representatives of organizations and researchers in all aspects of the research process To improve health and well-being through taking action, including system and social change.

4. Community Based Participatory Research CBPR emphasizes: (1) co-learning issues of concern and the issues that can be studied with CBPR methods and reciprocal transfer of expertise; (2) sharing of decision-making power; and, (3) mutual ownership of the products and processes of research.

5. DHSAClinical and Translational Research DVICTS/CTSA Grant Translational Research Continuum (T1, T2, T3) Community Engagement and Research (CER)

6. CER Section Aims Aim 1: Establish a new infrastructure that actively involves the community in setting clinical and translational research priorities, catalyzes new community and institutional interactions that align community health needs with research initiatives, and facilitates informed participation relevant research by the community.

7. CER Section Aims Aim 2: Develop new community-institution partnerships in clinical and translational science; Increase community member knowledge about clinical and translational science research, Promote community awareness of research initiatives that are aligned with community health needs, and, Improve community access to opportunities to register for research studies of interest.

8. CER Section Aims Aim 3: Identify, train, and mentor community leaders and healthcare providers and institutional trainees, researchers, and scholars in the principles and practices of community-based participatory research; Increase the participation of diverse populations in clinical and translational science research; and promote the dissemination of research findings.

10. Challenges • Data Coordination, Availability, Sharing • Identifying Community Decision Makers • High Turnover of Community Partners • Sustainability of collaboration • Multiple organizations/Duplication • Over saturation • Competition for Limited Resources • Lack of Innovation, Novel Partnerships • Communication/Siloing • Placing Value on CBPR • Overwhelming Participants

11. Reciprocal Learning • Capacity to Participate (Community and Systems) • Road Blocks in Transformation • Effective Dissemination/Producing Real Impact • Assessment Fatigue • Funding! • Competing Priorities • Limited and/or lack of resource coordination • Competing Service and Research Expectations • Geographic Roadblocks

12. Global Health Omar Khan, MD MHS Nancy Sloan DrPH okhan@christianacare.orgnsloan@christianacare.org Christiana Care Health System

13. How do we get there from here? Who are we? RNs, SW/anthropology, Community health/educator, Public health professional, Researchers, physicians 2. What do we want to do? Connect Interests: teaching (4), research (7), service delivery (8), social entrepreneurship (2), process & connectivity (1) N= 12 3. What resources do we have locally? Knowledge; interest; contacts 4. What resources do we need to obtain? Structure to be able to collaborate & connect Survey on GH interests (model after TJU?) 5. What is the next step? Continued interaction: virtually, listserve, meeting Recognition of mutual respect, collective engagement, interdisciplinarity

15. Maternal/Child Health Matthew Hoffman, CCHS David Paul, CCHS

16. Collaborations • IRB collaboration-reciprocity of IRBs • Follow-up on high-risk preterm infants (cognition, behavior, social, family-centered, home-based, school age) • Maternal follow-up • Database to link maternal & infant data • Maternal stress, depression, etc (cortisol)

17. Collaborations, con’t • Lab to clinical research • Outcomes specific to our population • Local protocol for National Children’s Study

18. Barriers • IRB / data sharing • Lack of consistent EMR • Funding • Important clinical questions (different view points on same issue) • Lack of forum to discuss research ideas

19. Cancer Diana Dickson-Witmer, CCHS Ayyappan Rajasekaran, Nemours

20. Challenges • Four separate IRB’s for our four institutions • Difficult to identify the institution specific requirements for attendance at tumor boards at each institution • Difficult to identify potential collaborators with shared interests. • Adult clinical trial accrual lower than pediatric clinical trial accrual

21. Opportunities for Collaboration • Early tracking of pre-invasive disease, specifically HPV infection • Collaboration to increase rate of HPV vaccination • Creation and promulgation of video and other methods of increasing awareness of clinical trials • Creation of videos of healthcare providers presenting clinical trials information to patients • Public awareness program for behavioral factors contributing to wellness

22. Opportunities • Use of Center of Excellence to promote women’s and children’s health • Multi-institutional tumor boards, live and video-conferenced • Website with clear instructions for completing educational modules required for attendance at tumor boards at each institution

23. Adolescent Health Roger Kobak, University of Delaware Judy Herrman, University of Delaware

24. Opportunities for Collaboration • Linking researchers/evaluators with current programs and policies • Local focus on staying in school/reducing drop out rates reinforces the need to attend to high risk behaviors in youth • Delaware is a unique “laboratory” in which to develop partnerships and conduct research

25. Challenges • Need for advocacy—teens often are without a voice or a vote • Economy/money/Time • Engaging Adult Caregivers • Networking—Knowledge of the interests, talents, and desire for partnering with others • “The left hand doesn’t always know what the right hand is doing!”

26. Tools Needed to Enable Success • Data—we have the YRBS (Middle and High Schools) • We have this Alliance with four strong members who bring different assets to the table • We have a cadre of people interested in adolescent health • We need to know the who/where/what of adolescent programs and research • Develop a web site allowing for individuals to make connections with others who have common research interests and goals—link this web site with the Delaware Health Sciences Alliance web site • Create a Center for Adolescent Health to serve as a “bridging mechanism” between interested advocates, program developers, and researchers • Conduct a forum for interested parties to meet and discuss opportunities (begin with UD, then include other interested parties).

27. Behavioral Health Cynthia Robbins, University of Delaware Roger Harrison, Nemours

28. Current Initiatives in Behavioral Health • UD Center for Drug and Alcohol Studies Surveys: YRBS, YTS, DSS • Project Life (suicide prevention) • SPF-SIG programming and evaluation (SAMHSA, DSCYF, DSAMH, UD) • University Schools Alliance • Front Door Team • 211 Help Line • Mobile Crisis Units • Bright Start

29. Opportunities for Collaboration • Laboratory/Behavioral Research on Biomarkers of clinical impact • Girl Scouts programs for children of incarcerated parents and girls leaving juvenile corrections • Drug and Mental Health courts • Reentry Initiatives • Nurse educators • Home visits • Clinicians in systems (families, schools, daycare)

30. Tools Needed to Enable Success • Resources for behavioral health issues of children w/ communication issues/special need • Training for nurse educators • Shared information about resources • Statistical/Methodological consultation • Cooperation of multiple IRBs

31. Challenges • Translating knowledge into behavior change • Communication between clinicians and researchers • Iaddressing needs of increasing Hispanic population • Children with disabilities/communication issues • Needs of Grandparents caring for children • Literacy Across the Life Span

32. Health Services Delivery Stephen Lawless, Nemours Neil Goldfarb, TJU

33. Institute of Medicine Dimensions of Performance • Efficiency • Equity • Safety • Family Centered • Effectiveness • Timeliness

34. Current National Priorities in Health Services Delivery • National Priorities • Patient and Family Engagement • Safety • Care Coordination • Palliative and End of Life Care • Equitable Access • Elimination of Overuse • Population Health • Infrastructure Supports

35. Current Initiatives in Health Services Delivery & Research • TOO MANY TO LIST!

36. Opportunities for Collaboration • Lots of shared interests across attendees – the question is how to foster collaboration given strong interest

37. Tools Needed to Enable Success • Searchable databases on researchers and research projects, and a bulletin board, to help identify potential collaborators • Community resource guide – what resources exist for women’s and children’s health, how can they be accessed? Where are they located, in relation to the population? • Coordination between partner organization IRB’s – centralized or standardized process • Student opportunities • Seed projects – more opportunities and funding

38. Challenges • Delays in care – provider vs. consumer barriers • Limited sharing of information • Services remain uncoordinated • Lack of handoffs and transitions in care • Quality data not available, or difficult to obtain • Differing definitions of women’s health – what’s related to women, versus all people • Large population, tough to tackle

39. How can DHSA Help? • Better communication about what DHSA is, and what services it offers • Promoting DHIN development, access, and use • Creating the inventory • Creating tools to facilitate information sharing and collaboration