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Cindy Tofthagen, Ph.D., a full-time researcher in the Division of Nursing Research, studies ways to improve cancer care. In particular, she aims to find effective approaches to manage treatment-related side-effects at home. Dr. Tofthagen is quick to note that her investigations are enriched by collaborations with contributors known as "citizen scientists," community members who take an active role on her research team.
One such community member is Julia Spann, who signed on for training through the Citizen Scientist Program at Mayo Clinic in Florida. Initiated in 2021, the program engages people who have a passion for all types of research and an interest in community engagement. "Julia’s input as a citizen scientist is invaluable," says Dr. Tofthagen. "She has helped us evaluate surveys, identify level of research participant burden, and has shared information about our studies with the community."
Below, Spann describes how she became interested in getting involved in research and how the Citizen Scientist Program helped her become an advocate in the community.
I am a retired educator and nurse, and I have had a passion for serving my community. I find it rewarding to assist other people personally, teaching them how to exercise their rights and to live their healthiest, most productive lives. I am particularly devoted to working with students and adults with disabilities.
I decided to get involved in research and join Mayo Clinic's Citizen Scientist Program because I saw it as an opportunity to combine my professional experience and my passion in a new and powerful way to benefit my community.
Citizen scientists are people in the community who volunteer to collaborate with medical researchers. They are part of a collaborative project alongside professional scientists, working in partnership on research to improve the health and well-being of people in their community. Citizen scientists play a crucial role in helping the community and the researchers work together and understand one another, and they assist researchers in many ways.
They may:
- Review study recruitment materials to ensure they are culturally appropriate.
- Give presentations in the community.
- Help conduct research.
The level of involvement depends on the nature of the research, the needs of the community, and how much time and effort the citizen scientist can devote to the work.
Training to Become a Research Advocate
My training began in November 2021, when I attended the online Sixth Biennial Science of Global Prostate Cancer Disparities in Black Men Conference. I was part of the conference track for people wanting to complete the Citizen Scientist Program. People attended the conference and participated in training from all over the world.
Due to my medical background, I assumed that the information at the conference would be easy for me to make sense of. However, there was a lot of new information, and we covered a lot of topics I was unfamiliar with. For example, I learned how concepts like "community engagement" are part of this area of research. I also learned the basics about prostate cancer and related health disparities. Current studies show that 1 in 7 Black men will develop prostate cancer.
I also had a chance to see inspiring, real-world examples of how citizen scientists play important roles in research advocacy. I look forward to future training and learning opportunities through the program. In particular, I plan to learn more about clinical trials and how they work.
After I completed the Citizen Scientist Program, I joined Mayo Clinic's Institutional Review Board. This group of people is responsible for protecting the rights and welfare of people who participate in research. The program taught me the ropes of research and provided the training I needed to work effectively with the other members of the board.
Institutional Review Boards typically include a variety of people with various kinds of scientific expertise. However, it is important for these groups to also include members of the community, like me, because we contribute a valuable perspective on research that is needed for the work to be successful and benefit the community.
—Julia Spann
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