Community Scientist Program

Program Manager: Erica Cantu, MPH - UTHealth School of Public Health - [email protected] – 832-904-0082

The Community Scientist Program allows community members to contribute directly to scientific research and helps researchers determine how best to engage communities, especially communities of color, on health care issues. Community members use their lived experiences with health conditions, such as cancer and chronic illness, to ensure that proposed research is culturally appropriate and relevant to the community, and that both the community and the researchers derive maximum benefit from it. Communities of color bear a disproportionate burden of disease incidence and mortality. Without adequate representation of diverse populations in their studies, researchers cannot learn about potential differences among groups and nor can they ensure that research results will benefit all populations. In turn, receiving feedback from community members allows researchers to develop well-rounded projects and meet increasingly common funding requirements for community involvement in research. Since its creation in 2017, the Community Scientist Program has trained 53 Community Scientists. In 2021, the Community Scientist Program expanded to included community members in Northeast Texas and will soon include Rio Grande Valley community members.

The program has been overwhelmingly well received. Community scientists have reported that they enjoy the feedback sessions, would participate again, and feel their input is valuable to researchers. In turn, researchers have reported that the feedback sessions are very informative, easy to schedule, and efficient. 

Community Members

Community Scientists provide feedback on research questions and study design, cultural appropriateness of study materials, recruitment and retention strategies, and more. Before becoming a Community Scientist, applicants attend training that covers the basic principles of research and how to provide effective feedback to researchers. Once the training is complete, the Community Scientists are invited to attend monthly feedback sessions requested by researchers via Zoom. Compensation is provided for each session attended.  

Past feedback sessions have covered:

• Development of innovative tools for presentation of clinical trial information

• Community recruitment methods for cancer screening trials

• Communicating scientific ideas to diverse lay audiences 

• Refining recruitment materials to attract hard-to-reach populations

• Perceptions of community members on coronavirus prevention measures

• How to improve recruitment for a wellness study targeted to prostate cancer patients and their caregivers

Community scientists provide a valuable resource to researchers, and the program benefits the Community Scientists by: 

• Increasing access to research opportunities

• Improving understanding of the research process

• Helping to serve as advocates for the community

• Contributing to research study development and implementation

• Receiving a certificate upon completion of training

• Receiving compensation for sharing expertise as a research consultant ($25/hour) 

How to Become a Community Scientist

To become a community scientist, you must be at least 18 years old and at least one of the following:

• A cancer survivor

• Currently living with a chronic illness (i.e., COPD, diabetes, high blood pressure)

• A caregiver to a cancer patient or person with a chronic illness

• Interested in learning about and supporting community research

You can apply for the program here: https://redcap.mdanderson.org/surveys/?s=EA8N7DK4KL

Hear about the program from real Community Scientists here:

Promotional video: https://www.youtube.com/watch?v=aAlwQOicRn4

                You can contact Sophia Russell, the program coordinator, with your questions about the Community Scientist Program at [email protected]. Thank you! 

Researchers

The Community Scientist Program provides support to researchers seeking cost-effective and efficient methods to gather feedback from racial minorities and/or cancer survivors and patients with chronic illness about issues pertaining to research design, implementation, and recruitment, retention and other barriers to participation. Community scientist sessions are held 2-3 times a month and help to streamline the process of gathering information about community needs, understanding of research, and cultural nuances by creating an infrastructure that works to empower community members to provide meaningful insight into all phases of research. These feedback sessions are free for researchers, and the community scientists are compensated for their time through the program. 

As community/patient engagement increasingly becomes a requirement among funding agencies like the NIH and FDA, researchers should consider feedback sessions as a way to improve scores on proposals and overall research outcomes. Researchers may request feedback sessions at any stage of the study development process.

Interested in requesting a feedback session? 

Feedback Session Request form: https://redcap.mdanderson.org/surveys/?s=WPH7T4LYY3

Watch this video to hear from past researchers:

https://www.youtube.com/watch?v=aAlwQOicRn4

For questions regarding the Community Scientist Program, contact Sophia Russell at [email protected].

Thank you!