Understanding UF Health Cancer Center Citizen Scientists: A resource for researchers

UF Health Cancer Center Citizen Scientists collaborate with researchers to ensure community perspectives are incorporated throughout the research continuum, from topic identification to study design and dissemination of findings.

UF Health Cancer Center Citizen Scientists in November 2022 from left to right: Zach Jones, Carlos Maeztu, Christy Evans, Nadine Zemon, Stanley Richardson and Shirley Bloodworth.

Our cohort of up to 10 UF Health Cancer Center Citizen Scientists includes community members who are cancer survivors and represents various races and ethnicities, disabilities, genders and sexual orientations. Citizen Scientists can range in age from 17 to over 90 years old and live in both rural and non-rural areas in the center’s catchment area. The group may also include young adult cancer survivors. All Citizen Scientists have completed certification on research methods, UF procedures and cancer-specific topics.

UF Health Cancer Center Citizen Scientists are assigned to each program, attend meetings to encourage ongoing bidirectional communication and participate in the Office of Community Outreach and Engagement Advisory Board. They participate in 12T3 meetings, in which novel research concepts are discussed and considered for pilot funding, and in the Scientific Review and Monitoring Committee process. They also review clinical trial protocols and make recommendations about participant engagement, informed consent language and study procedures. Citizen scientists also review OneFlorida+ cancer studies.

The role of Citizen Scientists and patient advocates

Citizen Scientists and patient advocates are community members from diverse backgrounds whose goal is to improve health outcomes that are relevant to patients and their families.

Although operating in distinct realms — Citizen Scientists in research and patient advocates in clinical care — both provide valuable feedback about the acceptability of proposed interventions, materials and engagement strategies, with the goal of enhancing the impact of research and care.

Citizen scientists are available for consultation to UF Health Cancer Center researchers to support study development across all phases of the study lifecycle, ensuring a patient-centered perspective and community-engaged research design.

Citizen Scientists graphic

Citizen Scientists

Citizen Scientists undergo training in research design, as well as cancer-specific trials through a cancer research curriculum developed by the UF Health Cancer Center. They are certified in HIPAA and trained on UF procedures for privacy and managing bias.

Citizen Scientists provide actionable recommendations from the perspective of the participant for proposal development, recruitment and retention strategies, informed consent language, and dissemination planning.

Citizen Scientists effectively support research teams by:

  • Translating findings
  • Creating practical solutions that improve participant experience
  • Advising on the development of culturally appropriate protocols and recruitment tactics
  • Sharing best practices across research networks

Patient advocates

Patient advocates provide guidance about patient rights and responsibilities and explain research and hospital policies and procedures in lay language to patients. They facilitate communication between physicians, scientists and patients. In addition, patient advocates provide feedback to improve the patient experience.

Patient advocates effectively supporting clinical teams by:

  • Providing recommendations on projects and sharing their stories in public forums