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Exploring the citizen-science partnership through narrative-based science communication

  1. Introduction

The magazine Science Trends recently interviewed Professor William “Bill” Sullivan, the Showalter Professor of Pharmacology and Toxicology at Indiana University School of Medicine (IUSM). In this interview, Sullivan encouraged readers to embrace their inner scientist: “We’re all born scientists and explorers, but somewhere along the way, we lose this sense of wonder.” Sullivan, a scientist working in infectious disease and a promoter of science communication, has reason to reflect on the role of science in our lives as it relates to our relationship with the world around us and the relationship between those who embrace their inner scientist and those who lost their sense of wonder. In his remarks, Sullivan suggests this distinction, but note that he does not demarcate between scientists, on the one hand, and non-scientists, or citizens like me, on the other. Indeed, as I argue, we all inhabit a position on the continuum of wonder and curiosity. There are scientists by trade or profession, but citizens who do not sit on the bench nevertheless have a vitally important role to play in the education, dissemination, and advocacy for continued scientific research and funding. In this blog post, I aim to close the gap between those who consider themselves scientists and those who view themselves as citizens only. I call on science communicators and citizens to explore the citizen-science partnership: a framework for shared discussion whereby scientists may better understand the diverse needs of a non-specialist audience, and citizens, for their part, seek to promote the value and benefit that science yields in their lives. I argue this partnership can be informed by adopting what I call here, a narrative-based approach to science communication.

In what follows, I say more about the gulf between scientists and citizens (section 2.), I introduce the role narrative plays in my science communication (section 3), I demonstrate this aptitude by rehearsing my own narrative framed by my personal experience living with brain cancer (section 4), and I emphasize the opportunity to highlight the advocacy for research that arises naturally from the practice of story telling (section 5). Ultimately, I achieve the aims of this post by encouraging science communicators to buttress their science communication with the scaffolding of storytelling.

  1. Public perception of science

Many citizens—voters, after all, hold an adversarial “us vs. them” attitude toward science, and even worse, some citizens harbor negative attitudes toward scientists themselves. According to the paper, “The effects of social identity threat and social identity affirmation on laypersons’ perception of scientists,” published in the journal, Public Understanding of Science, authors report that scientific findings that challenge, or “threaten” in-group beliefs, “[A]lter laypersons’ perceptions of the scientists who published the study [emphasis added].” The authors continue, “Scientists were perceived as less prototypical, less reputable, and less competent when their research results imply a threat to participants’ social identity compared to a non-threat condition [emphasis added].”

Taking a similar tack, Professor of Psychology at University of California, Berkeley, Tania Lombrozo, raises concerns involving social identity and public perception of science in an opinion piece submitted to NPR’s blog, 13.7 Commentary on Science and Society. In her op-ed, Lombrozo writes, “The dissonance between a person’s identity and the implications of scientific claims can be uncomfortable, prompting some sort of change to either the person’s identity or their acceptance of the relevant science [emphasis added].” The dichotomy suggests when confronted with scientific findings that fail to fit within an adopted framework, persons either change their identity or reject the findings. Intuitively, I would think, a rejection of scientific findings may present the easier way out. Lombrozo continues, “[S]cientific claims that become associated with political positions…can also become threats to political identity. And that broadens the scope of cases for which partisan politics can skew the perception of science.”

These selections advance a possible explanation for the “us vs. them” attitude that serves as a barrier to science communication and effective research funding: the results of scientific inquiry challenge the social and political identities of, at least some, citizens. Rather than seek to resolve this dissonance, citizens are inclined toward politically motivated attacks on scientists themselves. I urge readers to adopt this hypothesis, if only to entertain my view, and in so doing, I suggest we explore models by which bridges may be built between scientists and citizens.

  1. Narrative-based science communication

In my public speaking and lecturing, I champion a clinical practice called narrative medicine. On this program, medical practitioners are encouraged to develop therapeutic partnerships with their patients by learning to, as Drs. Sayantani DasGupta and Rita Charon describe, “elicit, translate, and interpret” the narratives told by those in their care. One aim of this approach to medical care is to view medical history taking as a nuanced story-telling event whereby a patient’s values may be identified to improve care delivery. I submit that similar objectives are set for science communicators, namely, to elicit, translate, and interpret. In medical cases, it is the role of the clinician to elicit and interpret a patient’s story. Science communicators must view their own work as the subject of translation and interpretation. On my view, effective science communicators elicit the story that lies beneath their own work and invite an audience to be party to the project of translation and interpretation. Context clues and audience engagement are indicators to evaluate the success of such translation and interpretation. Seeking eye contact, focus, attention, and note taking in a lecture hall, responding to questions during live broadcast across mediums such as Facebook Live or Instagram Stories, or soliciting “retweets” for scientific content on Twitter, are a few of the many tools the science communicator has at hand to track audience engagement.

  1. Inside my head: narrative, applied

It is my practice to implement narrative-based communication in my own research advocacy. Though I am not a bench researcher, I have good reason to engage the science literature, especially in the field of research oncology. I am a person living with brain cancer, specifically, glioblastoma, an aggressive and incurable brain cancer, with a dismal five-year survival rate of roughly 5%. Promoting research advocacy and funding is vital to my continued survival. Science communication, for me, is quite literally, life or death.

An objective in my work is to emphasize the critical importance of research funding. The National Institutes of Health (NIH), the largest funder of clinical trials in the country, and a one-of-a-kind facility for translational medicine, is the best hope for many to see durable treatments for deadly diseases. The “bench to bedside” capability of the NIH facility is a leader in research, yet its annual budget is only $30 billion, compared to nearly $750 billion in annual defense spending. Little traction will be made toward transforming deadly diseases into chronic, yet manageable, conditions, if researchers lack public support to call on Congress to increase NIH funding. Yet as we’ve seen, when scientific outcomes threaten in-group beliefs, politically motivated attacks on scientists skew the perception of science toward partisan politics. Defense spending galvanizes partisan politics in a way that translational medicine often does not.

I incorporate narrative-based science communication in my public speaking by recalling my own experiences living with glioblastoma. I feature the anecdote drawn from enduring a craniotomy (brain surgery), while awake, to educate an audience about neurological mapping protocol and neuropathology. I describe the standard of care to treat brain cancer, which includes surgery, radiation, and chemotherapy, to teach a general audience that our theories of cancer adopt a cellular paradigm that restrict therapies to cytotoxicity, leading to further side effects, and leaving alternative paradigms of carcinogenesis largely under-researched, such as theories of tissue architecture that seek to establish a theory of cancer that is consistent with other fields within the life sciences: embryology and histology. I highlight the population statistics and speak openly about my life and my young children to urge listeners towards research funding, having put a face to brain cancer.

I do not limit my speaking to the public. I am fortunate to regularly lecture to clinicians and physician-scientists whose research is further motivated by hearing directly from a patient who is beneficiary of their research.

  1. Conclusion

In this post I called on science communicators to consider the citizen-science partnership. I argued that this partnership might be explored if science communicators adopt narrative-based practices into their communication. I affirmed that people are not separated by a hard line that groups scientists into one category and citizens, another, but that each of us is located on the continuum of wonder and curiosity.

During my awake procedure, each hour I offered a message to my family that a nurse would relay to the waiting room. I spoke this message on hour one, “This is just as fascinating as I thought it would be.”

Science communicators, I call on you to elicit the story your research has to tell, translate that story, interpret it, and your audience will find it just as fascinating as you thought.

Edited by Bill Sullivan, PhD, Indiana University School of Medicine.

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About the Author
  • Adam Hayden

    Adam Hayden is a philosopher of science, freelance writer and blogger, public speaker, and person living with brain cancer. Adam sits on an advisory council with the National Brain Tumor Society, he co-moderates a monthly brain tumor Twitter-chat (@adamhayden), and he blogs at http://www.Glioblastology.com. Adam is married, with three young children and lives with his family in Indianapolis, IN.


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