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Community Engagement

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Workshops, Tools and Training for Researchers

CERP Partnered Research "How To" Series


How to Pretest a Survey Questionnaire 
Provides directions on how to conduct pretesting of survey questionnaires for research, outlines the advantages and disadvantages of different pretesting methods, and describes the pretesting process used by the Los Angeles County Department of Health Services Care Connections Program.


How to Translate Research Documents for Non-English Speaking Participants
Presents basic information on how to translate research documents into languages other than English. It also highlights different translation approaches, translation methods, and important considerations.


How to Design a Partnered Consent Form
Provides a guide to develop a community partnered research consent form which reflects the views of community members, while still meeting requirements for IRB approval.

How to Include Community Partners in Data Collection
Describes the process used by the Healthy Community Neighborhood Initiative research project to incorporate staff from community partners in data collection to increase trust and success of the project.

Informed Consent-IRB

  • Page Title: UCSF Human Research Protection Program- Committee on Human Research, Consent Guidelines
    Summary: Provides overview of importance of informed consent, and the required characteristics of appropriate consent for research. Samples and definitions of key terms are also available, as well as the required federal elements.
    Source: University of California San Francisco
  • Page Title: Consent Development from Clinical Research Resource HUB
    Summary: List of resources for Investigators, Study staff, and participants about clinical trials and the different needs that may arise as a result of being part of one. The most useful part of the website will be the portion for Study Staff, since it lists here information relevant to developing a consent form (links out to "UCSF Human Research Protection Program" link above). However this website is mostly for information on clinical trials -- quick links available for information on ethics and compliance and key terms glossary.
    Source: University of California San Francisco
  • Page Title: UCSF Human Research Protection Program- Committee on Human Research-Forms, Standard Formats, & Templates
    Summary: Sample Consent and Assent Forms depending on study type, or target population. Sample consent and assent forms are annotated to help the study team determine the information that needs to be filled in, as well as the relevant information for the form.
    Source: University of California San Francisco
  • Page Title: Informed Consent: Ethical Topic in Medicine
    Summary: List of questions that explain the importance and limitations of informed consent. Two case studies are also available with discussion topics.
    Source: University of Washington School of Medicine
  • Page Title: Levels of Consent
    Summary: Interactive Tutorials on Informed Consent. Sections: Introduction to Informed Consent, Levels of Consent (describing three different types of consent-Imputed, Implied & Informed Consent), History of Informed Consent, The need for informed consent, followed by a Quiz. Each section has an accompanying video.
    Source: PHG Foundation
  • Page Title: Informed Consent Orientation
    Summary: Web-based Instruction on Informed Consent with examples, exercises divided into different modules: Overview of Informed Consent, The Consent Process and After Approval Requirements. As of 04/03/2014, only these three modules are available. Each module has a quiz at the end of each module.
    Source: University of Minnesota
  • Page Title:The Informed Consent Process
    Summary: Web page for research volunteers, listing questions an informed consent form should answer inorder for them to be fully informed prior to entering a research study. Additional quick links available explaining adverse events and clinical translational research.
    Source: NYU Langone Medical Center
  • Page Title: Glossary
    Summary: Glossary of terms for research volunteers listing terms used in clinical research trials
    Source: NYU Langone Medical Center

General research

  • Page Title: Glossary of Clinical Research Terms
    Summary: Glossary of terms for research volunteers listing terms used in clinical research trials
    Source: University of California, San Diego
  • Page Title: Explaining Research
    Summary: Drop-down set of questions describing the basics of research, how studies are designed and what people should do before joining a clinical trial. Videos are included in certain portions (How is research made safe?, What is a control group?, What is random assignment?, Who can participate in research?, Seniors making a difference & Why should we participate in research studies [a video in Spanish])
    Source: University of California, San Diego
  • Page Title: Working with Researchers
    Summary: Links to guides and resource manuals for communitymembers and community organizations working with researchers. Contains a quick-start guide for CBOs.
    Source:
  • Page Title: What is Research?
    Summary: Text-heavy webpage explaining research from three sources ([Anglin, Ross, Morrison 1995], [Gall, Borg, Gall 1996] and [Patton 1990]). Three questions are answered: What is research, What are the purposes of research, and What is the research process -- a flowchart of the research process is included.
    Source: Penn State
  • Page Title: Episocopal Health Foundation CCBR Community Training Program: Camp Boot
    Summary: Training program for community members who are being introduced to research. Their training includes a pre & post test, a presentation with talking points as well as handouts. Training teaches the following skills: research design, interviewing and data gathering, data analysis, and Implementation & dissemination of plans and interventions. (NOTES, 1. Presentation is 155 slides in length. 2. If used, please cite CES4Health.info as source, along with resources listed in presentation.)
    Source: St. Luke Episcopal Health Charities

Randomization

  • Page Title: HIMH: A Participants Guide to Mental Health Clinical Research
    Summary: A brochure prepared by the NIMH, that provides answers to common questions about volunteering for mental health clinical research. A section of this document explains what randomization is and displays a diagram that helps explain how randomization works.
    Source: National Institute of Mental Health (NIMH)
  • Page Title: Randomization
    Summary: A page giving the definition of randomization and explaining further what it is, how randomization actually works, how to achieve randomization in randomized controlled trials, and a brief explanation of blinding.
    Source: Explorable.com
  • Page Title: An overview of randomization techniques: An unbiased assessment of outcome in clinical research
    Summary: Article providing an overview of randomization techniques. J Hum Reprod Sci. 2011 Jan-Apr; 4(1): 8–11.
    Source: PubMed
  • Page Title: Randomization in Clinical Trials
    Summary: A 10-page document describing Simple randomization, block randomization and minimzation method stratification.
    Source: University of the West of England
  • Page Title: Developing a Randomization Protocol in a Community-Partnered Participatory Research Project to Reduce the Burden of Depression
    Summary: A slide presentation by Dr. Thomas Belin, PhD, presented on October 12, 2012 as part of the first CTSI CERP-Biostatistics Workgroup Seminar.
    Source: Slide Presentation

Basic Study Design

  • Page Title: Basic Research Design
    Summary: A slide presentation going through the different study designs.
    Source: SUNY (found on SlideShare.net)
  • Page Title: Study Design 101
    Summary: Website dedicated to explaining the different types of studies that exsit, as well as their benefits and disadvantages.
    Source: George Washington University
  • Page Title: Understanding Research Study Designs
    Summary: Description of different study designs uses multiple graphics to describe the study designs.
    Source: University of Minnesota

CERP Faculty Seminar Series

Principles and Role of Community-Engaged Research

Resources Manuals

Training Materials

Dissemination and Sharing Knowledge

Additional references

Books and Chapters

Journal Articles

  • Aguilar-Gaxiola S, Ahmed S, Franco Z, Kissack A, Gabriel D, Hurd T, Ziegahn L, Bates NJ, Calhoun K, Carter-Edwards L, Corbie-Smith G, Eder MM, Ferrans C, Hacker K, Rumala BB, Strelnick AH, Wallerstein N. Towards a unified taxonomy of health
    indicators: academic health centers and communities working together to improve population health. Acad Med. 2014 Apr;89(4):564-72. doi: 10.1097/ACM.0000000000000198. Review. PubMed PMID: 24556775.
  • Corbie-Smith G, Ford CL. Distrust and poor self-reported health. Canaries in the coal mine? J Gen Intern Med. Apr 2006;21(4):395-397. PMCID: PMC1484739
  • Corbie-Smith G, Thomas SB, Diane MMSG. Distrust, Race, and Research. Arch Intern Med. 2002;162:2458-2246. PMID: 12437405
  • Eder MM, Carter-Edwards L, Hurd TC, Rumala BB, Wallerstein N. A logic model for community engagement within the Clinical and Translational Science Awards consortium: can we measure what we model? Acad Med. 2013 Oct;88(10):1430-6. doi: 10.1097/ACM.0b013e31829b54ae. PubMed PMID: 23752038; PubMed Central PMCID: PMC3784628.
  • Gamble VN. Under the shadow of Tuskegee: African Americans and health care. Am J Public Health. 1997;87:1773–1778. PMCID: PMC1381160
  • Israel, B. A., Schulz, A. J., Parker, E. A. et al. Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 1998; 19:183-202. PMID: 9611617
  • Jones L, Wells K. Strategies for academic and clinician engagement in community-participatory partnered research. JAMA. Jan 24 2007; 297(4):407-410. PMID: 17244838
  • Jones L, Wells K, Norris K, Meade B, Koegel P. The vision, valley, and victory of community engagement. Ethn Dis. 2009 Autumn 19(4 Suppl 6): S6:3-7. PMID: 20088076.
  • Keppel KG PJ, Heron MP. Is there progress toward eliminating racial/ethnic disparities in the leading causes of death? Public Health Rep. Sep-Oct 2010;125(5):689-697. PMCID: PMC2925005
  • King TE Jr. Racial Disparities in Clinical Trials. N Engl J Med 2002 May; 346(18):1400-2. PMID: 11986416
  • Wells K, Jones L. "Research" in community-partnered, participatory research. JAMA. Jul 15 2009;302(3):320-321. PMCID: PMC3050488
  • Wendler D, Kington R, Madans J, Van Wye G, Christ-Schmidt H, et al. (2006) Are racial and ethnic minorities less willing to participate in health research? PLoS Med 3(2): e19. DOI: 10.1371/journal.pmed.0030019

Journal Supplements

  • Ethnicity and Disease Journal Supplement, 2010, Volume 20, No. 1 Supplement 2: Creating Healthy African American Families. http://www.ishib.org/ED/sup_20_1_2_toc.asp
  • Norris K. Creating Healthy African American Families. Ethn Dis. 2010 Winter; 20(1 Suppl 2):S2-i. PMID: 20626186
  • Ferre C, Jones L, Norris K, Rowley D. The Healthy African American Families (HAAF) Project: from community-based participatory research to community-partnered participatory research. Ethn Dis. 2010 Winter; 20(1 Suppl 2): S2-1-8. PMCID: PMC3791221
  • Chung B, Jones L, Terry C, Jones A, Forge N, Norris K. Story of Stone Soup: A Recipe to Improve Health Disparities. Ethn Dis. 2010 Winter; 20(1 Suppl 2): S2-9-14. PMCID: PMC3709872
  • Jones L, Collis BE. Participation in Action: The Healthy African American Families Community Conference Model. Ethn Dis. 2010 Winter; 20(1 Suppl 2): S2-15-20. PMCID: PMC3791219
  • Brooks PE. Ethnographic evaluation of a research partnership between two African American communities and a university. Ethn Dis. 2010 Winter; 20(1 Suppl 2): S2-21-9. PMID: 20629243
  • Jones L, Wright K, Wright A, Brown ND, Broussard M, Hogan V. The Healthy African American Families’ Risk Communications Initiative: Using Community Partnered Participatory Research to Address Preterm Birth at the Local Level. Ethn Dis. 2010 Winter; 20(1 Suppl 2): S2-30-5. PMID: 20629244
  • Jones L, Lu MC, Lucas-Wright A, Dillon-Brown N, Broussard M, Wright K, Maidenberg M, Norris K, Ferre C. One Hundred Intentional Acts of Kindness toward a Pregnant Woman: Building Reproductive Social Capital in Los Angeles. Ethn Dis. 2010 Winter; 20(1 Suppl 2): S2-36-40. PMCID: PMC3787313
  • Abdou C, Schetter CD, Jones F, Roubinov D, Tsai S, Jones L, Lu M, Hobel C. Community Perspectives: Mixed-Methods Investigation of Culture, Stress, Resilience, and Health. Ethn Dis. 2010 Winter; 20(1 Suppl 2): S2-41-8. PMID: 20629246
  • Lu MC, Jones L, Bond MJ, Wright K, Pumpuang M, Maidenberg M, Jones D, Garfield C, Rowley DL. Where is the F in MCH? Father involvement in African American Families. Ethn Dis. 2010 Winter; 20(1 Suppl 2): S2-49-61. PMID: 20629247
  • Lu MC, Kotelchuck M, Hogan V, Jones L, Wright K, Halfon N. Closing the Black-White Gap in Birth Outcomes: A Life-course Approach. Ethn Dis. 2010 Winter; 20(1 Suppl 2): S2-62-76. PMID: 20629248
  • Wright K, Jones L, Hogan V. A roadmap for authentic community/academic engagement for developing effective community preterm birth education. Ethn Dis. 2010 Winter; 20(1 Suppl 2): S2-77-82. PMID: 20629249
  • Ethnicity and Disease Journal Supplement, 2009, Volume 19, No. 4 Supplement 6: Community-Partnered Participatory Research: Strategies and Tactics for Improving Community Health. http://www.ishib.org/ED/sup_19_4_6_toc.asp
  • Jones L. Preface: Community-partnered participatory research: how we can work together to improve community health. Ethn Dis. 2009 Autumn;19(4 Suppl 6):S6-1-2. PMID: 20085119
  • Jones L, Wells K, Norris K, Meade B, Koegel P. The vision, valley and victory of community engagement. Ethn Dis. 2009 Autumn;19(4 Suppl 6):S6-3-7. PMID: 20088076
  • Jones L, Meade B, Forge N, Moini M, Jones F, Terry C, Norris K. Begin your partnership: the process of engagement. Ethn Dis. 2009 Autumn;19(4 Suppl 6):S6-8-16. PMID: 20088077
  • Jones L, Meade B, Norris K, Lucas-Wright A, Jones F, Moini M, Jones A, Koegel P. Develop a vision. Ethn Dis. 2009 Autumn;19(4 Suppl 6):S6-17-30. PMID: 20088078
  • Jones L, Meade B, Koegel P, Lucas-Wright A, Young-Brinn A, Terry C, Norris K. Work through the valley: plan. Ethn Dis. 2009 Autumn;19(4 Suppl 6):S6-31-8. PMID: 20088079
  • Jones L, Wells K, Meade B, Forge N, Lucas-Wright A, Jones F, Young-Brinn A, Jones A, Norris K. Work through the valley: do. Ethn Dis. 2009 Autumn;19(4 Suppl 6):S6-39-46. PMID: 20088080
  • Wells K, Koegel P, Jones L, Meade B. Work through the valley: evaluate. Ethn Dis. 2009 Autumn;19(4 Suppl 6):S6-47-58. PMID: 20088081
  • Jones L, Wells K, Meade B. Celebrate victory. Ethn Dis. 2009 Autumn;19(4 Suppl 6):S6-59-71. PMID: 20088082

Reports

Community-based, participatory research and social determinants of health training programs and courses at UCLA

  • Community Based Participatory Research: Methods and Applications (HS266AB)
    Instructor: Kenneth B. Wells, MD, MPH
    This course offers an exposure to working with communities to improve health and health services in innovative partnered ways. For the purposes of this course, "communities" are defined as people who share a social or cultural identity, a particular illness, common resources (including geographic proximity), or communication channels (such as media, internet) pertaining to health. At the end of HS266A, fellows should be able to understand the practical/ethical issues of CBPR and put into practice the guiding principles of Community-Based Participatory Research for collaborating with communities in health-related research and be able to put into practice various quantitative and qualitative methods used in partnered research and in implementing partnered interventions and evaluations.
  • Determinants of Health (Spring Quarter) (HPM M242/CHS 232)
    Instructors: Jonathan Fielding, MD, MBA, MPH; Frederick Zimmerman, PhD; Steve Teutsch, MD, MPH; Jeremiah Garza, MA, MPH
    It is widely recognized that health outcomes depend far more on health behaviors, social, and physical environments than on medical care. This course introduces students to the underlying causes of health, wellness, and illness, as well as the theories and evidence supporting multiple underlying determinants of health in populations. Through these perspectives, students will increase their understanding of the interplay of biologic, social, economic, behavioral, environmental, and other factors that influence the health of individuals, populations, and subgroups. The course will clarify how an understanding of determinants of health can influence public policy, planning, and research to promote a healthier society with greater health equity.
  • Social Demography of Los Angeles (Fall Quarter) (CHS/SOC M263)
    Instructor: Anne R. Pebley, PhD
    This course introduces the social demography and social structure of Los Angeles, and focuses on the social stratification, inequality, and their consequences for health and health care. Los Angeles is a huge and highly diverse metropolitan area, which is often seen as a model (both good and bad) of future urban development in the United States and abroad. More generally, this course also provides a thorough understanding of the roots of social inequality and the relationship between social factors and health and well-being. The course is structured around readings and classroom discussion of the readings.
  • Ethnic Studies: Race, Inequality, and Public Policy (M 120)
    Instructor: Dale C. Tatum, PhD
    This survey course examines the major debates and current controversies concerning public policy responses to social problems in urban America. The course will examine institutional racism and whether America has become a Post-Racial society and if it still needs to implement policies such as affirmative action, in the Age of Obama. Background in economic, sociology, or urban studies preferred but not required.
  • Foundations of Social Welfare Policy. (SW M221A)
    Instructor: Yeheskel Hasenfeld, PhD
    This course will cover how the roots of American social welfare policy have given rise to today's social policy structure, the professionalization of social work and how it has paralleled major social policy issues from the early colonial settlements to the present day. Specific events and individuals that have influenced the development of public policy affecting vulnerable and diverse populations (e.g. racial and ethnic minorities, women, children, the poor, etc...) will be discussed, as well as the role of social research in informing social welfare policy.
  • UCLA Child and Family Health Leadership Training Program
    Director: Neal Halfon, MD, MPH
    The UCLA Child and Family Health Leadership Training Program provides interdisciplinary training in maternal and child health practice, research, and policy analysis for health professionals in the master of public health (MPH) program and students in the doctoral (PhD, DrPH) program at the UCLA Fielding School of Public Health. This program offers advanced professional training in the design of family-centered health services, formulation and analysis of policy options, advocacy for children and families, and research and evaluation of health systems serving mothers, children, families, and communities. Basic curriculum for the training program includes epidemiology, biostatistics, health services, environmental health and behavioral sciences, as well as research and analytic methods, policy and program planning and evaluation, with advanced courses in child health policy, nutrition, perinatal health, and other MCH areas.
    http://www.healthychild.ucla.edu/ourwork/child-family-health-leadership-training/
  • Robert Wood Johnson Foundation Clinical Scholars Program at UCLA
    Co-Directors: Robert H. Brook, MD; Carol M. Mangione, MD, MSPH
    The Robert Wood Johnson Foundation Clinical Scholars program at UCLA fosters the development of physician-leaders who will transform health and health care in this country. Scholars will be equipped to work with communities, organizations, practitioners and policy makers to conduct innovative research important to enhancing the health and well being in these communities. The program’s major focus emphasizes community-based research and leadership training. http://hss.semel.ucla.edu/csp/index.html
  • National Institute on Aging Pre-doctoral Training Program (1T32AG033533)
    Director: Judith A. Seltzer, PhD
    Sponsored by NIA, the California Center for Population Research (CCPR) training program "Economics and Demography of Aging Training" supports six predoctoral trainees each year for 5 years starting from 5/1/2011. NIA traineeships support training in the demography of aging, broadly defined. Examples of relevant areas of research include but are not limited to retirement, intergenerational relations, and life course processes in health, especially during old age. The traineeships provide monthly stipend and support for tuition and training-related expenses. All trainees are required to pursue their training and related research on a full-time basis. Selections of trainees for the following academic year occur every spring quarter. Solicitations for applications are distributed over CCPR and other mailing lists in Winter Quarter. Selections are announced at the beginning of June. Appointments are normally from September 1 to August 31 of the following year.
    http://www.ccpr.ucla.edu/CCPRWebsite/training/nia-predoctoral-training-program
  • National Institute of Child Health and Development Pre-doctoral Training Program (5T32HD007545)
    Director: Judith A. Seltzer, PhD
    The UCLA Population Training Program currently sponsors four students each year. The program emphasizes the multi-disciplinary character of contemporary demographic research by exposing trainees to an integrated program of research in economics, sociology, and public health. The training program is a mixture of formal course work and practical research experience, designed to provide students with a firm grounding in a social science discipline, a rich understanding of the multi-disciplinary range of research in demography, and experience and skill in designing, conducting and presenting scientific work. Selections of trainees for the following academic year are made every spring quarter. Solicitations for applications are distributed over CCPR and other mailing lists in Winter Quarter. Selections are announced at the beginning of June. Appointments are normally from September 1 to August 31 of the following year. http://www.ccpr.ucla.edu/training/nichd-predoctoral-training-program
  • The Bixby Center on Population and Reproductive Health Training Program
    Director: Anne R. Pebley, PhD
    The Bixby Training Program coordinates coursework in population and reproductive health within the Fielding School of Public Health and provides training opportunities for Public Health students outside the classroom. Activities include supporting the student-led Reproductive Health Interest Group and providing advice and funding for international summer internships and research mentorships. The program also coordinates the Bixby Certificate in Population and Reproductive Health Program
    http://bixby.ucla.edu/bixby_training_program.asp

Community-engaged research or disparities research centers at UCLA

  • Resource Centers for Minority Aging Research (RCMAR)
    • Central Coordinating Center for Resource Centers for Minority Aging Research (RCMAR); Principal Investigator: Steven P. Wallace, PhD
      http://www.rcmar.ucla.edu/
    • Resource Centers for Minority Aging Research Center for Health Improvement of Minority Elderly (RCMAR/CHIME); Principal Investigator: Carol M. Mangione, MD, MSPH
      http://chime.ucla.edu/index.htm
  • Centers of Excellence in Partnerships for Community Outreach, Research on Health Disparities, and Training (CDU/UCLA Project EXPORT Center); Principal Investigator:  Arleen Brown, MD, PhD 
    http://www.hsrcenter.ucla.edu/research/export.shtml
  • National Institutes of Health (NIH) Centers for Population Health and Health Disparities
    http://cancercontrol.cancer.gov/populationhealthcenters/cphhd/
  • UCLA-USC Center for Population Health and Health Disparities; Principal Investigator: Alex Ortega, PhD
    http://www.ph.ucla.edu/cphhd/index.html
  • Accelerating Excellence in Translational Research (AXIS); Principal Investigator: Jay Vadgama, PhD
    http://axis.cdrewu.edu/
  • The Center to Eliminate Cancer Health Disparities at Charles R. Drew University; Principal Investigator: Jay Vadgama, PhD
    http://cdrewu-dcrt.org/
  • The Los Angeles Stroke Prevention/Intervention Research Program in Health Disparities (SPIRP); Principal Investigator: Barbara G. Vickrey, MD, MPH
  • Center to Bridge Research, Education, Innovation, Training and Education (BRITE CENTER); Principal Investigator: Vickie M. Mays, PhD, MSPH
    http://www.britecenter.org/
  • The UCLA Center for Health Services and Society; Principal Investigator: Kenneth Wells, MD, MPH
    http://hss.semel.ucla.edu/index.html
  • UCLA/RAND Prevention Research Center; Principal Investigator: Roshan Bastani, PhD; Co-Principal Investigator: Paul Chung, MD, MS
    http://www.ph.ucla.edu/prc/
  • UCLA Preparedness and Emergency Response Research Center: A Public Health System Approach; Principal Investigator: Kimberley Shoaf, DrPH
    http://www.cphd.ucla.edu/

Conferences

Journals

Webinars