The Tisch Cancer Institute

• Module One: Welcome and Orientation
  This module provides an introduction to the Community Scientist program, outlines the activities and roles community scientists can engage in, and gives an example of community scientists in action. 

• Module Two: Research Ethics
  This module covers the importance of an Institutional Review Board (IRB), fundamental ethical principles in clinical research, informed consent, consent for participating in clinical research versus clinical care, and an example of community scientists in action. 

• Module Three: Sponsored Research
  This module covers the research process and identifies how community scientists can get involved, federal funding for research, how to read a research article, and an example of community scientists in action.  

• Module Four: Clinical and Translational Science
  This module covers what translational science is, the role community scientists play in this field, the different types of research studies that community scientists are likely to encounter, and an example of community scientists in action. 

• Module Five: Stakeholder Engagement
  This module covers information about stakeholder groups, the value of stakeholder engagement and perspective from community members, and an example of community scientists in action. 

• Module Six: Cultural Diversity in Research
  This module covers the concept of cultural competency and how community scientists can ensure their perspectives are represented and respected in research, how community scientists can navigate new learning environments, the importance of having a diverse population in a clinical trial, and an example of community scientists in action.  

• Module Seven: Biomedical Informatics
  This module covers the concepts of bioinformatics and big data, the ways this field can be used to improve life and answer questions, and an example of community scientists in action.  

• Module Eight: Quantitative Research
  This module covers what quantitative research is, quantitative research methods, quantitative data analysis, and the advantages and disadvantages of doing quantitative research. 

• Module Nine: Qualitative Research
  This module covers what qualitative research is, qualitative research methods, qualitative data analysis, and the advantages and disadvantages of doing qualitative research. 

Cancer Research Curriculum 

These training modules are specifically tailored for engaging with cancer research. All Community Scientists interested in training will take this curriculum as well. 

• Module One: Introduction to Cancer and Cancer Research
  This module covers basic information about cancer and clinical trials, a case study of a cancer patient, and a spotlight on community scientists. 

• Module Two: Causes of Cancer
  This module covers causes of cancer, a case study of a cancer patient, what a cancer research team meeting is like, team science, and a spotlight on community scientists. 

• Module Three: Treatment of Cancer
  This module covers surgical treatment of cancer, a case study of a cancer patient, palliative care, patient-centered treatment plans, and cancer clinical trial enrollment. 

• Module Four: Prevention and Survivorship
  This module covers risk reduction of cancer, a case study of a cancer patient, survivorship, and a spotlight on community scientists. 

• Module Five: Social Determinants of Health and Cancer
  This module covers social determinants of health, their importance, cancer health outcomes and disparities, social determinants of health in clinical practice, and a spotlight on community scientists. 

Additional Resources

• Community Scientist Institute
• CDC’s Principles of Community Engagement
• University of Florida Community Scientist Program

The Centers for Disease Control and Prevention’s Principles of Community Engagement defines community-engaged research as “working collaboratively with groups of people who are affiliated by geography, interest, or similar circumstances to address issues affecting the well-being of that group.” 

According to the same report, there are several areas in which community engagement can have a positive impact on research, including:

• Design, delivery, and agenda: community engagement can change the focus of projects, how they are initiated, and the availability of funding. Study design, materials, participation, and dissemination can be improved by community input, and new areas of collaboration can be identified. 
• Implementation and change: research findings can be leveraged to advance health outcomes (e.g., create new or improved services, initiate policy and/or professional practice changes), while long-term partnerships can be expanded. 
• Fostering trust in research: community engagement provides opportunities to improve the consent process, identify ethical issues, and create processes for resolving ethical issues when they arise. This can foster trust and lay the foundation for future research-community collaborations. 

Including community scientists in the research process allows for a mutually beneficial relationship to be forged, supported, and sustained for decades to come.

Our Community Scientists Workgroup meets each month, and researchers are welcome to present to the group on potential collaboration opportunities. When disseminating information about your research to the group, please keep in mind that it must be in lay terms. Any abbreviations or complex concepts must be clearly explained.

Additionally, it is always advisable to thank the community scientists at the end of the meeting, and most importantly, to follow up on the outcomes of any collaboration. This is one of the most frequent requests made by community scientists who interact with researchers: they want to know the results of their contributions and to receive feedback.

• IASLC Supportive Training for Advocates on Research and Science (STARS)
• National Breast Cancer Coalition’s Project LEAD:
• Fight Colorectal Cancer’s Research Advocacy Training and Support (RATS)
• Research Advocacy Network (RAN):
• Department of Defense Congressionally Mandated Medical Research Program - Peer Reviewed Cancer Research Consumer Advocates
• National Cancer Institute (NCI) Office of Research Advocates
• American Association for Cancer Research (AACR) Scientist Survivor Program
• Resources and Opportunities for Cancer Research Advocates