Becoming a Citizen Scientist
“Hopefully by being a part of this, I’m making some kind of a difference, and I’m contributing somewhat to society in a good way. It’s my little way of participating in medical research. Woo hoo! I’m also assisting researchers with a layperson perspective on things.” – Claudia Harris, Citizen Scientist
What is a citizen scientist?
The Citizen Scientist Program connects scientists with the general public. Health care and health research are changing. Nationally, scientists, doctors, patients, families, and policymakers now want to learn from and listen to one another. Scientists have realized that all people have important points of view to offer those who seek to improve health and health care.
The vision for this program is to help create a learning health care system. A learning health care system looks to clinical practice — real-world doctors’ offices, patients, and their families — to find out what questions are important to ask. Citizen scientists, researchers and health care systems are partnering to come up with creative and practical solutions that impact patients and families. That way, answers are more relevant to the real-world settings in which people seek health care every day.
The University of Florida and UF Health approach to the learning health care system is patient-centered, which means it listens to the voices of patients, families, and the general public. Patient-centered research can improve the quality and relevance of research. The Citizen Scientist Program will train you to be a part of the conversation about health research. In addition to other activities, you will meet with researchers to discuss their research projects. Ultimately, high-quality and practical research will change how patients interact with their doctors and will have a positive effect on their overall health.
All citizen scientists are part-time employees with the University of Florida. They undergo a screening process, are compensated for their time, and receive extensive training and support as they learn to engage in the research process. Generally, citizen scientists work between four and five hours per week between the hours of 9 am. and 5 p.m.
Why was the Citizen Scientist Program created?
The University of Florida has a long tradition of engaging and working with patients and their families. The initial work focused primarily on ensuring that the perspectives of parents who had children with special health care needs, as well as those of the children and adolescents themselves, were incorporated into research. As early as 1998, parents were included as co-investigators in children’s health studies. Including the generable public and consumers of health care in research should help new discoveries and treatments reach patients more quickly.
What do citizen scientists do?
Below you can see a chart and descriptions that outline some of the tasks that citizen scientists engage in on a regular basis and how those tasks fall under different categories of engagement.
Minimal engagement describes the process of seeking input from patients, community members, and stakeholders to inform how research-related information is communicated. It requires the shortest amount of time. You may review all or some sections of a project. You may comment on how easy the materials are to read, whether you think they are practical and relevant, and whether you think the images, graphics, or design of materials send the right message. Your feedback will be used in the final versions of the researchers’ documents.
Moderate engagement means decisions about how the study is designed are based on information you provide. This involves collaboration and shared decision-making. Moderate engagement includes the activities that fall under the category of minimal engagement, above, but also idea generation, study design, and research strategy. Researchers are often interested in your thoughts on how to get people involved in research (recruitment and retention strategies) or on how to share findings with the public (information dissemination plans).
Sustained engagement is a significant effort to collaborate with researchers. You would become part of the research team as a co-investigator and be involved in the project from beginning to end. You would also help develop research questions. You can contribute ideas about research design and how to conduct the study in the real world. You can also share ideas about how to get the word out about the study. You may even help write scientific publications. Being a co-investigator means you will have a large role in decision-making.
The Citizen Scientist Program manager will work with researchers and citizen scientists to decide the level of engagement desired. Additionally, it makes sense to keep an open mind. Researchers and citizen scientists may increase the engagement level based on an interesting conversation or a new point of view. For example, Dr. Chintan Dave explains in his video, found below, that he planned to seek citizen scientist input on his patient engagement plan. However, as he participated in the discussion he heard about an important issue he had not thought about before. This issue ended up changing his study design (an example of moderate engagement). If this grant becomes funded, Dr. Dave is discussing the possibility with the citizen scientists of incorporating one of the scientists onto the research team as a co-investigator for the duration of the study, which would be an example of sustained engagement.
If you are interested in learning more, please contact Janet Brishke at firstname.lastname@example.org or 352-294-5979.