Module 1: Welcome and Orientation

• Participants are introduced to the Community Scientist program; learn about the activities and roles they may engage in and get an example of Community Scientists in action.

Module 2: Research Ethics

• This module covers the importance of an Institutional Review Board (IRB), fundamental ethical principles in research, informed consent, consent for participating in research versus clinical care and an example of Community Scientists in action.

Module 3: Sponsored Research

• This module covers the research process and points where Community Scientists can get involved, federal funding for research, how to read a research article and an example of Community Scientists in action. 

Module 4: 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 5: 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 6: 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 7: 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 8: 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 9: 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 1: 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 2: 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 3: 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 4: 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 5: 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.

Information for Researchers

Engaging Community Scientists in Your Research

Community involvement in research is essential for the health care system to improve. In 2013, the Institute of Medicine recognized that community-engaged research must occur during all phases of clinical and translational science research processes. 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 Principles of Community Engagement, there are nine areas in which community engagement can have a positive impact on research:

1. Agenda: Engagement can change the choice and focus of projects, how they are initiated, and the availability of funding. New areas for collaboration can also be identified.
2. Design and delivery: Study design, materials, representation/participation, communication, and dissemination can be improved by community input.
3. Implementation and change: Research findings can be used to create changes (e.g., new or improved services, policy changes, or changes to professional practices), and the maintenance of long-term partnerships can be expanded.
4. Ethics: Community engagement provides opportunities to improve the consent process, identify ethical issues, and create processes for resolving ethical issues when they arise.
5. The public involved in the project: Community members’ knowledge and skills can be enriched, and their contributions can be recognized and rewarded. In turn, this can foster trust and lay the foundation for future collaborations.
6. Academic partners: Community engagement can foster a better understanding of the issue under study and a better appreciation of the value of community involvement for researchers.
7. Individual research participants: Better study design and implementation can make it easier for community members to participate in and benefit from research.
8. Community organizations: Organizations can gain knowledge, connections with other community members and entities, and new organizational capacity. These benefits can foster trust and lay the foundation for future collaborations.
9. The general public: Engagement can create better receptiveness in the general public to research. In turn, they can receive more benefits from it.

Including our experts in the research process can encompass these nine areas and allow for a mutually beneficial relationship to be forged and supported between researchers and community members.

Meeting with Community Scientists

Our Community Scientists meet monthly, and researchers are welcome to present to the group about potential collaboration opportunities, such as grants. When disseminating information about your research to the group, it must be in lay terms, and any abbreviations or complex concepts must be clearly explained (see checklists below).

Additional items that will help you work more effectively with Community Scientists include:

• Biosketch: a short biographical sketch – but not NIH-formatted. This should be in lay language.
  • Example: “My name is _________, and I am a _____________ (Doctor of Pharmacy; General Internist; etc.). I am currently in my ________ year of a ____________ (post-doc; internship; etc.), and I am conducting this research __________ (as a conclusion to my formal education; as my first research project as a junior faculty, etc.). On this project, I will work as the ______ (PI or co-PI).”
• Project Overview: a short summary of your project. This should be in lay language and should include information about the research question, methods, outcomes, and what you hope to accomplish by conducting this research. Be sure to define any acronyms or terms.
• Reading materials: Community Scientists may want the opportunity to read as much as possible about a project before meeting with researchers. Providing additional reading materials about your research or existing work on the topic may enhance your interactions with Community Scientists. Though these materials typically are not in lay language, they may still be a helpful resource. Materials in lay language or short, concise materials are ideal.
• Meeting Goals: a list or description of what you hope to accomplish by meeting with Community Scientists. This can include a meeting agenda or list of questions.

Below are some actions to take after attending a workgroup meeting:

• Always thank the Community Scientists at the end of the meeting. You can also follow up with a thank you email or note.
• Inform the Community Scientists on the outcomes of your collaboration. This is one of the most frequent requests made by community members who interact with researchers: they want to know the results of their contributions and feedback.