A research poster reporting on citizen scientists’ communication with scientists as members of a clinical research team placed first in the predoctoral population sciences category at the UF Health Cancer Center Research Day in November.
The study, “Bridging the Divide Between the ‘Regular Joe’ and Scientists: Exploring How Citizen Scientists Perceive their Role, Motivation, and Communication with Scientists in Cancer Research,” involved interviews with nine past and current citizen scientists at UF to assess how they perceive themselves and their roles as they interact with clinical research teams.
“Citizen scientists play such an important role in representing the voice of the community in health research, but we don’t know much about the communication challenges or successes they experience working with scientists,” said Rachel Damiani, a doctoral candidate in health communications at UF’s College of Journalism and Communications. Damiani, who presented the poster, worked on the study with her advisor, Janice Krieger, Ph.D., a professor in the advertising department and director of the STEM Translational Communication Center in the College of Journalism and Communications, and Betsy Shenkman, Ph.D., professor and chair of the College of Medicine’s department of health outcomes & policy, director of UF’s Institute for Child Health Policy, associate director of population research at the UF Health Cancer Center, co-director of the UF Clinical and Translational Science Institute (CTSI), and executive director of the OneFlorida Clinical Research Consortium. The study team also included professors Debbie Treise, Ph.D., Kim Walsh-Childers, Ph.D., and Carla Fisher, Ph.D., all in the College of Journalism and Communications, Janet Brishke, M.P.H., a research coordinator in the UF College of Medicine’s department of health outcomes & policy, and Shirley Bloodworth, a citizen scientist at the UF CTSI.
Damiani pointed out that because citizen scientists’ involvement in clinical research can be time-consuming and costly for the organizers, it is important to encourage citizen scientists to remain actively engaged in research programs for as long as possible. However, it is difficult to engage citizen scientists without understanding their own perspectives about their experience.
Citizen scientist programs like the one at the UF CTSI arose in response to an industry-wide trend toward more patient-centered health care and clinical research. The nine citizen scientists currently enrolled in the UF program participate in a number of ways, from helping researchers develop study questions that are relevant to patients, to providing guidance on recruiting patient populations, to advising researchers on the dissemination of study results. These citizen scientists are in a unique situation because they encounter scientific language and practices that are potentially very different from their daily lives.
The study showed that citizen scientists were motivated primarily by a desire to engage in an enriching experience for themselves and their community, to serve as a bridge-builder between scientists and the “Regular Joe,” and to help scientists translate their research to the public. The citizen scientists also reported that group size, the research scientist’s behavior, and the use of scientific jargon all factored into their communication with scientists. Citizen scientists were willing to learn scientists’ jargon to perform their roles and relate to scientists.
“We hope that these findings will provide useful information about how to expedite resources, improve recruitment, and sustain their involvement,” Damiani said.
To help facilitate the continued participation of citizen scientists in clinical research, the research team recommended having program coordinators arrange for small group sizes and provide materials to citizen scientists ahead of time. The researchers recommend that future studies focus on examining the effectiveness and impact of citizen scientists in increasing the public’s understanding of science and scientists’ understanding of the public.