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Community Scientist Program

The Community Scientist Program aims to improve community health and health care through community-engaged research. This program connects researchers with trained patients and community members (stakeholders) to obtain rapid feedback to enhance research projects and programs. Community Scientists are a diverse group of community members from three Texas regions, and they provide valuable insights by sharing lived experiences with cancer and/or a chronic illness.

What is Community Scientist?

A Community Scientist is an individual who has lived experience or possesses first-hand knowledge of a particular community or health issue. A Community Scientist has a desire to learn about research, an ability to provide constructive criticism and a willingness to be an advocate for his or her community.

Community Scientists:

Serve as a sounding board to ensure research addresses local patient and community stakeholder interests
Provide advice on the development of culturally appropriate studies and recruitment strategies
Provide input on research questions and study designs

Interested in becoming a Community Scientist?

If you are active in your community, live in Houston, Northeast Texas, or the Rio Grande Valley, speak English or Spanish, and meet one of the following criteria, please contact us to learn more about becoming a Community Scientist.

I am a cancer survivor
I currently have a chronic illness like asthma, diabetes or high blood pressure
I am a caregiver to a cancer survivor or person with a chronic illness
I am interested in learning about and supporting community research

Community Scientists are required to participate in a four-hour training and are then invited to provide feedback to researchers during monthly Feedback Sessions. Please note that research staff cannot serve as Community Scientists because of their intimate involvement in the research process.

Submit an application now. For any questions regarding participation in the program, please email us at CommunityScientistProgram@mdanderson.org.

Feedback Sessions

Community Scientist Feedback Sessions are a one-hour, facilitated sessions designed to provide patient and community input about issues pertaining to study design, implementation, recruitment, retention and other potential barriers to participation. There is no cost to request a Feedback Session.

Feedback Sessions include a brief presentation from the researcher and a discussion with a group of Community Scientists led by a facilitator. Feedback Sessions are held three to four times a month via Zoom or Webex across the three regions.

Researchers are encouraged to utilize Feedback Sessions at any stage of the research process. This includes research studies that are early in development, in progress, or ready for dissemination of research findings. The structure of the sessions seeks to shift the power to prioritize the voices and perspectives of the Community Scientists.

Past topics have included:

Innovative tool development for simple presentation of clinical trial information
Community recruitment methods for a lung cancer screening trial
Reaching diverse audiences for lay science communication
Refining recruitment materials to attract hard-to-reach populations
Reviewing interview questions to understand the intensity of heart failure pharmacotherapy among older adults

Researchers can request a Feedback Session by completing the REDCap application. For questions regarding Feedback Sessions, please email CommunityScientist@mdanderson.org.

MD Anderson Departments that have scheduled a CSP Feedback Session:

Health Disparities Research
Behavioral Sciences
Epidemiology
Health Services Research
Radiation Oncology
Surgical Oncology
Breast Surgical Oncology
Pediatrics
Breast Medical Oncology
Genetics
Gynecologic Oncology & Reproductive Medicine
Urology
Radiation Oncology

Could your research projects or patient materials benefit from input from laypersons' perspectives? Read the article.

Interested in Developing Your Own Community Scientist Program?

The Community Scientist Program offers consultations for institutions interested in establishing their own community-engaged research program. Through personalized guidance, we can help you design and implement a program that bridges the gap between researchers and the community. Ready to get started? Fill out our consultation form here to request a meeting with our team.

"The group was very engaged and provided great input on my design examples... It was very helpful to hear from community members who would potentially be participants in a trial what appealed to them, what they found confusing and what they thought could be organized differently."

~Mediget Teshome, M.D.

"Really engaged discussion with the group, our mission is to try to disseminate science in different communities and we received great input on how to do this, both in terms of topics, venues and advertising. Very engaging group full of useful suggestions."

~Kristina Stemler, Ph.D.

"It was a very informative, engaging experience that will have direct benefit to the project. I look forward to participating/using Community Scientists again."

~Mariana Chavez, M.D.

"We got a lot of stellar feedback from the Community Scientist group that we used to enhance our tool, Without that feedback, the tool would not be anywhere near as strong as it is now."

~Jack Banks, Ph.D.

"The meeting with the community scientist helped me reshape the project to answer what my patients would like to ask, not what a researcher would like to ask. As a researcher, it is easy to be distracted while planning the details of the research plans. But the community scientist continued to remind me of the fundamental questions from the patient and community's perspective so that the result could be a true benefit to the community."

~Min Ji Kwak, DrPH

Maximizing research impact

FAQs for Researchers

Why should I request a Community Scientist Feedback Session?

Increasingly, both funders and researchers are seeking cost-effective and time-efficient methods that engage groups of stakeholders and patients to enhance current research practices and improve dissemination. The Community Scientist Program’s Feedback Sessions streamline the process of gathering feedback by creating a process that works to empower community members to provide meaningful insight into all phases of research.

What is the purpose of a Community Scientist Feedback Session?

A Feedback Session allows a researcher to gain feedback from his or her community of interest or patient group about issues pertaining to design, implementation, recruitment, retention and other potential barriers to participation.

How much time is needed to have a Feedback Session?

Participation in the Community Scientist Program requires a small investment of time. In total, a researcher spends on average less than four hours of his or her time preparing for and participating in the Feedback Session. The breakdown is as follows and is spread out over time.

Feedback session preparation meeting: 30 minutes to 1 hour
- This meeting helps researchers prepare for the Feedback Session and allows the Community Scientist Program staff to understand which Community Scientists to include in the session.
Feedback Session: 1 hour
Feedback Session Evaluations:
- Demographic survey ~15 minutes
- Initial Feedback Session Evaluation ~15 mins
- 6-month Feedback Session Evaluation ~15 mins
- 12-month Feedback Session Evaluation ~10 mins
Research Update Session: ~30 minutes; 12+ months after initial Feedback Session
- Research Update Sessions are intended to provide Community Scientists with a forum to receive information related to how the feedback they provided has influenced investigators’ studies. This is a means to communicate research findings back to community, specifically focused on Community Scientist input and impact.

How much will this cost?

The Community Scientist Program is free to use and is currently paid for by a grant through the Center for Clinical and Translational Sciences (CCTS). CCTS is mainly funded by the National Institutes of Health Centers for Translational Science Award (NIH CTSA) grant.

Can I recruit the Community Scientists for my study?

You may not use the Feedback Session to recruit for your study. You may, however, share information regarding the study so that Community Scientists can contact you or your research staff for more information outside of the Feedback Session. Some Community Scientists who participate in the Feedback Session may at times recruit others from their community.

Why is there a facilitator? Can I facilitate myself?

The Community Scientist Feedback Session utilizes a facilitator who has experience working with group processes and understands the principles of community engagement. The use of an independent facilitator allows a researcher to listen to feedback and ask for clarification without having the responsibility of leading the process.

How soon after requesting a session can I have one?

Community Scientist Feedback Sessions require at least two to four weeks of preparation after the initial request form has been completed.

Can I have a Community Scientist Feedback Session in Spanish if no one on my research team speaks Spanish?

Research teams must have a Spanish-speaking team member to present the study materials. Because research teams have more background information about the study they’re presenting, the team must select someone familiar with the study to present to the Community Scientists and respond to follow-up questions.

Can I pick or recommend specific experts to participate?

The Community Scientist Program staff is charged with the recruitment of Community Scientists. Ideally Community Scientists should not have a prior relationship with the researcher or the staff to ensure that feedback is open and honest.

How can I help ensure that the Feedback Session is scheduled in a timely manner?

Identifying the right Community Scientists and finding a date that works for everyone can be complex. Your prompt responses to emails and voicemails regarding your availability, clarification of your questions or patient population and any other information needed to move your Feedback Session forward is critical to getting yours scheduled.

Do I need IRB approval to have a Feedback Session?

You do not need IRB approval. The Feedback Session is a process to inform the development, conduct or dissemination of research but is not considered research itself. The Community Scientists who participate in the Feedback Session are not research subjects; rather, they are advisors and/or consultants.

Can the information from a Feedback Session be used for research purposes or publication?

It depends on how you intend to use the information. It is acceptable to describe the process and the input that you received. However, because the Community Scientists are not research participants, you cannot provide details of who participated or analyze the input by any demographics.

For example:

We received detailed input from a representative group of stakeholders to help guide our evaluation. A group of consumers who have used the clinic was convened by the Center for Community-Engaged Translational Research using a structured process called the Community Scientist Program (Feedback Session). The Feedback Session uses best practices for community engagement and an experienced team to overcome barriers to engaging groups of stakeholders and facilitate meaningful input from stakeholders. From the Feedback Session, we learned that participants thought the registration process was too long and that the experience with the interdisciplinary team was very important in determining whether they would return to the clinic. We used the input from the Feedback Session to streamline our registration process and provide more opportunities for participants to engage with our interdisciplinary team. Overall the input we received from Community Scientists was extremely helpful in understanding how our services are used and for improving operations.

What is the difference between a Feedback Session and a focus group?

Feedback Sessions are not intended as research. They provide a relatively quick way to gain patient or community input on the development or implementation of a research project. Focus groups are conducted with the use of an explicit interview guide where all questions have been pre-identified. In a focus group, the facilitator is more focused on the subjective experience of the group as opposed to the individual. Feedback Sessions are utilized to dig deeper into the individual’s knowledge and experience as it might relate to the study. The Community Scientists participating can come from a variety of backgrounds with one shared experience, like a particular health condition. While there are two to three main topics that will be discussed during a Feedback Session, the discussion is not limited to specific questions. This allows the facilitator to focus the discussion on what is most helpful to the researcher and his/her project. This is important, as issues that may not have been identified prior to the meeting may turn out to be the most insightful for the research being discussed.