In the spring of 2020, Andrei Stoica had an idea. As he stood among a crowd of protesters in Kansas City, Missouri, chanting that Black Lives Matter, he knew he wanted to create something that would share what he considered the real story of the protests fueled by the murder of George Floyd.

But in that moment, he couldn’t have seen how that kernel of an idea would grow into a grant-supported project with the goal of supporting underrepresented voices writing about health issues. Nor could he have guessed that an upcoming collaboration with a graduate student from the University of Kansas and a nursing professor at the University of Kansas Medical Center would support those marginalized voices.

But that’s what happened. Citizen journalism — the concept of collecting, analyzing and disseminating news by the general public — gained a major foothold that night, and the collaboration of three people continues to support health-related community journalism in the Kansas City area.

The Collaboration Begins

The three major players in this project are Stoica, who despite his lack of formal education in journalism wanted to start a media association; Brynn Fitzsimmons, a Ph.D. student and graduate teaching assistant in KU’s English department; and Carli Zegers, Ph.D., MBA, APRN, an assistant professor in University of Kansas School of Nursing.

Stoica is the founder of the Kansas City-based Independent Media Association (IMA), a volunteer-run organization that, according to its website, is run by a team of volunteers and posts articles at independentmedia.us. His idea for IMA came about because of how the Black Lives Matter protests in Kansas City were being reported.

Stoica recalled being on the scene when national and local television cameras filmed the protesters, interviewed a few people on the fringe of the crowd and then packed it in so they could get a video package edited in time for their next newscast.

“The traditional media weren’t telling the full story,” Stoica explained. “The things I was seeing in the media were not what I was experiencing on the ground, and I wanted there to be a place where the real story, as I saw it, was shared.”

So, he began to livestream the protests so people could see what was happening for themselves.

“At first, IMA was mainly just a way to get people involved, get more cameras on the streets, get the story out kind of deal,” Stoica said. “But then I started working with Brynn, who helped guide the way we cover things and helped define it. Brynn helped us see that the story should come from the people involved, and the most marginalized people should tell the story first.”

Getting the Writer Involved

Brynn Fitzsimmons, who uses they/them pronouns, teaches composition at KU and researches rhetoric, but they are also a professional writer and former journalist. At first, Stoica said he was hesitant about involving Fitzsimmons.

“I knew community engagement is really important for universities, and people at universities obviously want their work to impact the community,” Stoica said. “But I was skeptical because academic authority always comes with that. But from our very first meeting, we centered and came together.”

Fitzsimmons started assisting with protest coverage, but it wasn’t long before another topic became equally important: the COVID-19 pandemic.

“As I started working with the IMA, health topics came up. By then it was the fall of 2020, we’re in the middle of a pandemic, and people weren’t going to get vaccines for another six months.”

Citizen journalists of IMA were interested in talking about COVID-19, but no one thought they should write about it.

“Every time I would talk to a citizen journalist about health issues, whether it was related to COVID-19, or mental health access, or health care access or even food access in the pandemic, they’d say things like, ‘Oh, I don’t think I can cover that because it’s a really technical topic and I don’t want to mess things up,’” Fitzsimmons said. “I’ve studied rhetoric of health and medicine, so my bent is toward these topics,” Fitzsimmons said. “Instead of accepting their ‘I just can’t do that,’ I decided to ask, ‘What could we do to fix that?’”

Getting the Health Information Specialist Involved

Fitzsimmons attended an event hosted by the Health Humanities and Arts Research Collaborative (HHARC), an organization set up to promote collaboration between departments to understand human health. Two things happened there that would ultimately be the fix Fitzsimmons was looking for.

First, Fitzsimmons discovered that graduate students were eligible for grants from the HHARC. Next, Emily Ryan, co-facilitator of the HHARC, told Fitzsimmons about a new KU Medical Center professor who might be interested in citizen journalism. Her name was Carli Zegers, and she joined the faculty of KU School of Nursing in January 2021 with a research interest in health literacy and communication.

“When I got the email from Brynn, I was really excited. I said, ‘What you’re describing is health literacy because its definition is to find, understand and utilize health information,’” Zegers said.

At first, Fitzsimmons was nervous about involving Zegers in the project. Zegers is an assistant professor; Fitzsimmons is a graduate student. In the hierarchy of academia, Zegers could have pulled rank and usurped the goodwill Fitzsimmons had built with Stoica and IMA. But that didn’t happen.

“What we’re talking about is systems of power. It was really important to me that we could follow the leadership of the community that I felt when I started speaking to Carli and found that was her commitment as well.”

‘Owning’ the Story

Power — who has it, who doesn’t — is an important aspect of citizen journalism. It gives power to the individual, not a media company, to share information with others.

“If you don't like the stories that are being told about your community, then change them,” Fitzsimmons said. “If the things that impact your health and the health of the people around you are not being represented, change them. And you can use your smartphone and a notebook to do that.”

These new voices have the power to address health disparities through the dissemination of health information, Zegers said. Because health disparities are so closely tied to inequities in resources and access to specific information, the right type of information, given to the people who need it, has the power to lessen the disparity, she said.

“These barriers can be overcome through citizen journalism. These citizen journalists can provide information in context, leverage opportunities for greater understanding and apply to their journalism the health care information that they learn in partnership with a health care provider,” Zegers explained.

Getting Financial Backing

In July 2021, Zegers, Fitzsimmons and the IMA were awarded a seed grant from KU’s Health Humanities and Arts Research Collaborative, an organization set up to promote collaboration between departments to understand human health. It was part of the first round of grants ever presented by the collaborative.

Initially, the funds were going to be used to hold face-to-face workshops facilitated by health care experts. But there were two problems.

First, the rise of the Delta variant of COVID-19 shut down in-person events again. The organizers also realized that their target audience — citizen journalists — didn’t have time to come to in-person events, anyway. They were too busy doing their jobs, taking care of their families and generally doing the things that kept them from being professional journalists in the first place.

From in-person events to Zoom events to finally settling on a video library of health experts, “the reasons why we were successful with this grant was because we recognized what wasn’t going to work,” Zegers said. “It was a beautiful morphology. And that seems fitting. Health care and journalism as professions are very similar in terms of, ‘OK, what’s new today? What are we dealing with?’”

Creating a Video Library

Zegers, Fitzsimmons, Stoica and the IMA team decided to create a video library that (after an initial registration) anyone could access. The goal, Fitzsimmons said, was not to answer specific questions about a health issue but instead provide a framework for viewers to gain insight and find reliable information through worthy sources.

The recent U.S. Supreme Court decision to overturn Roe v. Wade, which changed the legislative landscape on abortion, illustrated the distinction.

“We have a library of asynchronous video presentations. We wrapped them up in the spring of 2022,” Fitzsimmons said. “Citizen journalism tends to happen during natural disasters, social unrest lot of people are saying, ‘Oh, I don’t like the way this is being talked about’ or ‘This is the way that this decision is going to affect me and my community, and it isn’t being reflected by the mainstream news. I want to change the narrative.’”

But go into the IMA library, and you won’t find anyone explaining the Roe v. Wade decision or even commenting on abortion. Instead, visitors can find information on how to conduct citizen journalism responsibly and how to find and evaluate resources.

“The way we framed the videos was not so much having the experts answer a specific question in a video. Rather, the experts are going to say, ‘Based on my training, here’s a place to look for reliable information,’” Fitzsimmons said.

One such expert invited to add a video to the library was Michelle Cochran, clinical assistant professor in KU School of Nursing. Her video, titled “Gaining Insight into Population Health with System and Data Sources,” sounds academic, but Cochran said she was careful to simplify the presentation. Unlike the students Cochran teaches at KU Medical Center, where each class builds on the next in the sequence, these users are unknown.

“I was not familiar enough with the audience to know their baseline knowledge, so the video is 45 minutes but still an extremely foundational overview and a broad brush,” Cochran said.

Cochran’s video concentrates on finding valuable sources in the study of population health, which researches the health outcomes of a particular group of people rather than the health of a single person.

“Those sources are out there, but many people don’t know where they’re at or how to interpret them,” Cochran said. “So, I thought that was good place to start.”

Knowing how to interpret these statistics is also important to presenting the truth of many health issues, Cohran said. That’s because one danger of citizen journalism is presenting someone’s experience as true for everyone in that particular group, she said.

“There are so many things about health that are emotional because it affects our well-being. And if you can identify with someone who shares a similar experience — that’s very impactful. But it’s also important to say, ‘How does that extrapolate to the entire population?’

In the study of population health, one person’s opinion and experience can be placed in a larger context of the population that person represents.”

Back to the Future

Stoica said the IMA videos haven’t seen a lot of traffic so far, but the HHARC grant provides funding for advertising their existence on social media sites. In addition, Fitzsimmons and Zegers have given presentations at academic conferences in hopes of increasing traffic to the site as well as inspiring other universities to develop their own citizen journalism collaborations.

The reasons Stoica started IMA and the collaboration with Fitzsimmons and Zegers remain important and ongoing, he said.

“I have two philosophical ideals. One is to educate — to have someone see a livestream and stop being on the fence by saying, ‘Wow. I didn’t know that was happening. I need to find out more, ’” Stoica said. “The second is to encourage everyone that they can do it. If no one is telling your story, find a way to do it,” he said. “There are barriers, but I want help with whatever roadblocks exist and help citizen journalists take control of the narrative again.”