The TCI’s Community Outreach and Engagement (COE) Community Scientist Program works with community stakeholders to address cancer disparities and ease the burden of cancer for the patients, families, caregivers, and communities we serve within our catchment area, which includes the New York City metropolitan region. We also aim to maximize the impact of our research by collaborating closely with the community and multidisciplinary team members at Mount Sinai.
Community Scientist Program
In creating a community scientist program, we hope to address the growing need for our researchers and community members to better understand and engage with one another by creating a pathway for community members to get involved in the research process and be able to make innovative and insightful contributions to projects.
What is a Community Scientist?
We see the community scientist as an advocate of the community we serve. Community scientists will be trained to engage with and be the voice of their communities. Community scientists have proven valuable in increasing communities’ knowledge and awareness of research, building trust in scientific research, and informing areas of research design and ethics. They can be included on grants and give input to researchers on how to approach patients for enrollment, look at consent language, and talk about whether certain trials would be important to the community.
Jean Claude Noel
“Become who you are.”
This quote from Irvin Yalom may best describe how opportunities in life happen, not by design, but as the convergence of ‘life moments’, in this case, as a patient, as a long-time volunteer at Ruttenberg Treatment Center, and more generally as a reflection of my interest in people and my commitment to contribute to ‘reducing disparities in access to cancer care’. My experience as a prostate cancer patient and the high incidence and mortality observed in men diagnosed with prostate cancer naturally led me to focus on this specific cancer.
I was not born to become a citizen scientist, but as often the case, the leadership team of the Cancer Equity Accelerator initiative at Mount Sinai enabled me to step into this role, working with Nihal Mohamed, PhD. The completion of studies in psychoanalysis, society, and culture, with a recent focus on research, was another natural link to the psychosocial aspects of illness. Melissa Mazor, PhD was instrumental in facilitating this latest transition, bringing together my multiple life transitions in different cultural contexts.
Interacting with patients, families and caregivers as a ‘citizen’ and medical teams as a ‘scientist’ brings meaning at my stage of life, for which I am grateful and excited.
What Does a Community Scientist Do?
There is a wide range of what a community scientist may do depending on their interests and level of engagement with a project. The different categories of community scientist and levels of engagement are described below. Throughout all categories, citizen scientists offer an invaluable perspective to researchers and their work.
Community Scientist Roles
- Individual: Individual community scientists work together with an individual research group. The levels of engagement described below allow for flexibility and can change as a community scientist’s interest changes.
- Minimal: Research teams seek input from community scientists on how research information should be communicated. For example, community scientists may review grant applications, consent forms and recruitment materials.
- Moderate: Community scientists have a greater level of collaboration with researchers. They may help to effectively recruit participants for studies, develop community-relevant research questions and hypotheses, or advise on how to share research findings to their communities.
- Sustained: Community scientists work in partnership with researchers. They may be a member of the project group and regularly participate in team meetings to discuss the project's progress, successes, and challenges. They may also help present projects or may even represent the project team or organization at local, state-wide, or national conferences or meetings. This level of engagement requires significant time and effort on the part of the community scientist.
- Protocol Review Monitoring Committee (PRMC) Role: Community scientists help modify research protocols and incorporate community input. They may comment on a study’s recruitment plan, design, and consent language. They can also propose solutions to increase engagement in clinical trials and identify opportunities to bring patient and research communities together.
- Those who are interested in this role can send their CV to the PRMC Research Program Director, Venesha White: Venesha.White@mssm.edu.
These roles will be remote for the foreseeable future.