Engagement Journalism in Action: Supporting New Yorkers with Long COVID
A recap of my graduate work towards an M.A. in Engagement Journalism
How I Got Here
As a new student in the engagement journalism program at CUNY’s Craig Newmark Graduate School of Journalism last August, I was tasked with choosing a community. So I, and each of my classmates, selected a community to work with for the duration of the program.
Our goal? To help address unmet information needs with a collaborative approach. In other words, we set out to report with and for — as opposed to on — each community.
My classmates have done incredible work since, collaborating with New York City runners, Afghan refugees, religious deconstructors, Two Bridges and Harlem residents, adoptees, students, New Yorkers at risk of flooding, and street vendors.
Alongside them, I set out to help address the information needs of New Yorkers with long COVID. It’s important to note that, while I have a loved one living with long COVID, I’ve not experienced it myself; I came to this work after navigating autoimmune challenges throughout my early twenties.
Information Gathering
The first step to any engaged journalism project is listening. So, I set out to learn about the community from the community. Who makes it up? What challenges do they face? What strengths do they have? What, if any, information needs are unmet?
Below you’ll find a summary of what I learned from hours of desk research and interviews with more than 75 people.
WHO LONG COVID AFFECTS
It’s estimated that 1 in 5 people infected with COVID develop some form of long COVID, according to data from the U.S. Centers for Disease Control. This translates to about 1 in 13 people in the U.S. — roughly the same number of people living with asthma.
Long COVID is the umbrella term for new or ongoing health problems caused by a COVID infection. Medically, it’s often referred to as post-acute sequelae of SARS-CoV-2 infection (PASC).
Long COVID can affect people of all ages and conditions following a COVID infection, including those with initially asymptomatic and mild cases.
In New York, about 1 in 12 people experience long COVID, per statewide estimates. In the city alone, this is a population large enough to fill Yankee Stadium more than 14 times over and more than five times the population of residents with HIV.
Locally and nationally, women are between 1.4 and 2 times more likely to report long COVID than men. This may be due, in part, to differences in male and female immune systems that contribute to higher rates of autoimmune conditions in women.
To date, transgender and bisexual people also report higher rates of long COVID compared to U.S. adults of other gender and sexual identities. It’s likely that long COVID disproportionally affects communities of color, too, given existing health disparities and systemic barriers to medical care.
As longtime HIV and AIDS activist and co-founder of The Network for Long COVID Justice JD Davids put it to me in an interview, “Infectious diseases can be markers of inequity, marginalization and discrimination.”
In New York City, we’re already seeing this play out. Data from the Department of Mental Health and Hygiene shows that residents of the Bronx, and Latinos across the city, reported disproportionate rates of long COVID compared to residents of other races and boroughs in 2021.
Early research points to additional risk factors, such as pre-existing conditions like Type 2 diabetes, autoimmune conditions and HIV. High viral load is also correlated with long COVID, as is the reactivation of viruses like Epstein Barr Virus (the virus that causes Mononucleosis, or “Mono” for short).
WHAT LONG COVID LOOKS LIKE
Long COVID is known to wreak havoc on the body. There’s a huge range of symptoms and severity, from mild to severely debilitating. Some common symptoms include racing heart rate, dizziness, fatigue, changes to vision and hearing, memory and concentration trouble, depression and blood clots, to name a few.
Emerging theories about what’s at play in the body point to a few possible causes of long COVID, including viral persistence, micro clots, autoimmunity, and chronic inflammation, among others. While more research is needed, long COVID is impacting people’s wellbeing right now.
NOT AN ANOMALY, A NORM
Long COVID is part of a larger category of health conditions known as infection-associated conditions. Think Lyme disease and AIDS, to name two. While long COVID is new in so much as it is triggered by the novel Sars-CoV-2 virus, infection-associated conditions are not.
Outbreaks of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been recorded following instances of viral illness since the 1930s. Almost one third of SARS survivors met the diagnostic criteria for ME/CFS four years after their initial infection. Despite this history, post-viral conditions like ME/CFS have been dismissed and underfunded for years. ME/CFS has a disease burden double that of HIV in the U.S., yet only a small fraction of the funding. Of the major diseases the NIH funds research for, ME/CFS receives the least.
Debunked research has contributed to the harmful narrative that infection-associated chronic fatigue is caused by psychological rumination. In other words, mental health has historically been treated as a cause, rather than a symptom of infection-associated conditions, leading to harmful medical interventions. The history of ME/CFS, and infection-associated conditions at large, are relevant to long COVID because long COVID is not a singular pathophysiological phenomenon.
It’s estimated that more than half of people with long COVID meet the diagnostic criteria for ME/CFS. Some meet the diagnostic criteria for dysautonomia (dysregulation of the nervous system) and other conditions.
COMMUNITY CHALLENGES
In addition to living with challenging symptoms, most of which have no known cure, long-haulers have been gaslit and dismissed by medical providers. While more than $1 billion in taxpayer dollars has gone to the NIH’s RECOVER initiative — funding long COVID specialty clinics and research — the number of people living with some form of long COVID remains far greater than the number of clinicians well-equipped to treat it.
Many people with long COVID are unable to work or access financial support. A Brookings Institute report recently found that long COVID may be responsible for one third of the U.S. labor shortage, keeping 4 million people out of work.
People with long COVID can also face isolation and stigmatization from their communities and loved ones.
COMMUNITY STRENGTHS
In the face of these challenges, the community has come together: to share information, to form hundreds of advocacy and peer support groups, to collaborate with NIH and CDC, and to conduct patient-led research.
For thousands of community members, Twitter, Facebook, and Slack are online gathering spaces. Body Politic, for example, is a grassroots health justice organization with a 13,000+ person Slack group for people living with long COVID. Facebook is home to hundreds of Facebook groups dedicated to long COVID. Some of these groups focus on specific long COVID health concerns, such as hair loss, or are groups based on identity, such as this group for Black women with long COVID. On Twitter, some people identify as long-haulers in their bios and use hashtags like #LongCOVID to share information and stories.
Lots of nonprofits and grassroots collaboratives have sprung up in the wake of long COVID, too. Some organizations, like #MEAction Network, have acted as a guide and support for those organizing around long COVID. Patient-Led Research Collaborative is made up of long COVID patients and researchers that grew out of the Body Politic COVID-19 Support Group. They led a study documenting more than 200 symptoms of COVID-19.
COMMUNITY INFORMATION NEEDS
Learning about the community’s strengths and challenges helped me understand where engaged journalism could provide value. Journalism alone can’t tackle all of the above challenges, but it can address gaps in information.
I began mapping out information needs in the fall of 2021 by talking with people living with long COVID, medical providers, researchers, and caregivers. In these conversations, the primary goal was not to gather quotations for a story, but to learn. The most common information needs that came up in these conversations included:
- Nonpartisan, reliable, and scientifically-sound health information
- Where and how to access long COVID resources and care (e.g., support groups and COVID-friendly providers)
- General awareness and recognition of the existence of long COVID
In the fall of 2022, I continued asking community members about their information needs. This time, I was inspired by a Startup Sprint course with Jeremy Caplan to ask questions a bit differently. With a solid understanding of what types of information would be valuable for community members, I began asking less about what and more about when. When would information be most useful in peoples’ journeys with long COVID? Where, in that journey, could a news product or service provide the most value?
It became clear that there are several moments in time when community members tend to face an information gap. The first, and arguably largest, information gap occurs for people when they are newly experiencing long COVID. For instance, people can now learn about long COVID on the CDC’s website here, but may not know to ask their doctor about related conditions. People may join a relatively new or smaller support group on Facebook, but not know of larger groups like Body Politic or Long Covid Families. Even when finding a well-established and moderated support group, people may not have the energy or time to cull through two plus years of information.
I spoke with the founder of Body Politic, Fiona Lowenstein, about these information gaps. They’re the same information gaps that inspired them to bring together community members to write a book called The Long COVID Survival Guide.
We talked about additional moments in peoples’ journeys where information gaps are common: at the one year mark, when people become eligible to apply for disability benefits; during pandemic waves, when reinfections (and subsequent relapses) are most likely to occur; and when new medical tools, like boosters, become available.
This research and reporting informed an extensive landscape analysis, including market alternatives, key stakeholders, community statements, “how might we” questions, a value proposition canvas, and hypothesis about how to address information gaps.
From this process, I learned that there’s a wealth of information about long COVID scattered across the web. It lives on local and national government agency websites, hospital websites, social media channels and support groups. Yet, it can be overwhelming to know where to start.
Practicum Project
THE PROJECT
I set out to amplify existing community insights in an easy-to-navigate spot. My goal was to provide curated, vetted and accessible information to New Yorkers with long COVID — helping bridge the gaps between isolation and community, misinformation and knowledge, and confusion and direction. These are common gaps for anyone navigating a new, chronic health condition.
To do this, I partnered with THE CITY, a nonprofit newsroom for New Yorkers, on the MISSING THEM project. MISSING THEM began as a digital memorial in 2020 and has since remembered the lives of more than 2,600 New Yorkers who’ve died from COVID-19. The project is evolving with the pandemic. It’s now focused, in part, on understanding the ongoing impacts of the pandemic on New Yorkers and their communities.
In the fall of 2022, THE CITY and MISSING THEM team began hosting community conversations. The team, along with dozens of volunteers, has collectively talked one-on-one with more than 75 New Yorkers about their questions and concerns. Inevitably, long-lasting health problems following COVID came up. So, I worked with the MISSING THEM team — currently Anjali Tsui and Melissa DiPento — to pitch, develop and launch a long COVID engagement framework, including callouts, community conversations and events, and a service journalism series.
This started with a reported piece about the state of long COVID in New York City in English and Spanish, translated by Hercilia Mendizabal. The story highlighted new findings from the Department of Mental Health and Hygeine’s 2021 Community Health Survey (which is not yet released). The survey found that long COVID has disparate impacts by race, gender and borough in NYC.
We published the story with a callout form in English and Spanish to hear from New Yorkers with long COVID, caregivers and clinicians directly. The intent of the callout form is to scale community engagement beyond the reach of one-on-one conversations.
To ensure we’re reporting with and for — and not just about — New Yorkers with long COVID, we’ve included the following questions in the callout:
- What questions do you have for patient advocates, scientists and doctors who are knowledgeable about long COVID?
- What coping strategies, insights or advice do you have for other New Yorkers living with long COVID?
- What do you wish your friends and loved ones knew about long COVID? How can they best support you?
THE DISTRIBUTION
We’re distributing the callout far and wide via a combination of direct, online and offline outreach. To date, I’ve reached out to more than a dozen long COVID advocacy and support groups, several of which have shared the callout with their networks. I’ve also shared the story and callout with sources and community members who I’d been in touch with throughout the reporting process.
Melissa, Anjali and I have started reaching out to mutual aid groups, clinicians’ groups and community health organizations, too. We’re focused on reaching residents in The Bronx, who we know are reporting higher rates of long COVID compared to residents of other boroughs. We’ll continue to share the callout forms in online gathering spaces, and hope to spread the word via additional community conversations in 2023.
Meanwhile, the story was republished by and inspired coverage at several other outlets. Originally published by THE CITY in English and Spanish, it was republished by Documented, City Limits, Telemundo and Welcome2TheBronx. It was featured in a segment on Telemundo and NY1’s morning show.
In addition to my own personal distribution of the story via email, text, Twitter and Slack — which included a Twitter thread about the project — the story was shared in THE CITY’s newsletter and on THE CITY’s social media channels, as well as by my colleagues at THE CITY and Craig Newmark Graduate School of Journalism.
THE RESPONSES
We heard back from dozens of New Yorkers across the five boroughs, the majority of whom are living with long COVID. People shared their experiences managing long COVID symptoms while navigating work and day-to-day activities.
Many responses point to challenges I’ve documented above. Even though there’s more information than ever about long COVID, people are struggling to access knowledgeable and supportive medical care.
The most common questions we received can be broken into four distinct questions: Why is this happening to me? Is this going to be permanent? What can I do to get better? Where can I find medical care?
THE NEXT STEPS
Given these challenges and questions, I’m currently working to produce a service journalism guide on finding help — medical, social, and financial — for long COVID in New York City. The guide will include insights and advice from community members, scientists and clinicians around the city.
To ensure this will actually be valuable for the audience its intended for, I also pitched the idea to community members. From these conversations, I iterated on my original pitch. For example, I heard that, to be accessible, the guide should be shared in text and audio formats.
To report this piece, I’ve been in touch with community members who shared their experiences and questions with THE CITY, clinicians at long COVID clinics, and about two dozen hospital teams to gather information and advice.
In putting together this guide, my biggest challenges are prioritizing information and presenting it in a way that’s easy to navigate. Informed by my conversations with community members about their information needs, this will involve partnering with members of THE CITY’s team on edits, visuals, and overall formatting of the piece.
Any future work will be accompanied by a fundamental engagement journalism practice: establishing feedback loops. We’ve already been in contact with the New Yorkers who’ve filled out our callout form, and we’ll continue to share progress as we go — inviting participation and feedback while keeping folks informed about our work.
Project Impact
THE METRICS
To assess the impact of my work, I chose several metrics at the start of my project. These can be broken into quantitative and qualitative measures.
The main quantitative measure I’m using to assess my work is reach: How many community members have I reached through my work? This includes people I’ve talked to and people who’ve engaged with callouts.
Alone, I’ve talked to more than 75 people living with long COVID. Together, with the team at THE CITY, we’ve collectively engaged almost 200 people between one-on-one interviews, the callout, and community conversations about the pandemic. Their insights, experiences and questions have directly shaped our reporting, and will continue to do so in the months ahead.
I also plan to monitor reach via unique page views. Here, I want to note that I’d be using these numbers as benchmarks — not as definitive markers of success. That’s because page views alone are not a holistic measure of impact. There are many factors — beyond the quality or usefulness of journalism — that act as uncontrolled variables (content, time published, date published, current news cycle, etc.) This awareness is useful for any kind of journalism, but especially true of an engaged journalism project, where the primary goal is facilitating community participation in news (rather than acquiring link clicks for the sake of traffic).
The main qualitative measure I’m using to assess my work is community feedback: Is my work well-received or critiqued? Has anyone in the community I’ve engaged with provided constructive feedback? Has my work provided value, in the form of useful information, for community members? Am I building trust with community members?
So far, I’ve heard largely positive feedback from community members about the project. Below are some of the responses I’ve gotten when sharing my work:
- “Thanks again for doing this piece and callout! It’s so needed.” — New Yorker with long COVID
- “It’s really helpful because it lets patients know that there’s help out there. And a lot of people get very despondent and feel they’re never going to get through this and you are an important part of the health care team. By spreading information and putting resources out there where people can get it, it makes it easier for them to negotiate the health system. So, you’re doing a great service to society at this time of need.” — head of long COVID clinic in NYC
Going forward, I’ll continue to gather community feedback to shape the direction of the project with questions like: Is this providing value? What could be done differently to provide more value? What could be done differently to make it more accessible?
Lessons To Carry Forward
I learned many things as a graduate student in the engagement journalism program. Some things, like learning how to best approach strangers on the street or how to interpret scientific studies accurately, have been harder won skills than others. Here are three core lessons I’ll be carrying forward in whatever work I take on next.
Listen deeply and test everything. These are two parts of a whole. First, learn about information needs; then, try to address them and listen again. What can be improved? Is it actually valuable for the audience you’re intending? By practicing deep listening and incorporating community feedback into my practicum project design from the start, I was able to apply valuable insights to the project. For example, I’m planning to create an audio version of the upcoming service journalism guide to ensure it’s accessible to more folks; this was a recommendation from several community members. One related lesson that I’ll carry forward is to share my work earlier and more often. It’s often easier said than done, but this kind of sharing is key for iteration.
Center relationships and impact. In other words, people first stories, stories second. In engagement journalism, great stories are great, but they’re a means, not an end. Meeting information needs is the goal. For my reporting, this meant building sustainable relationships and slowing down the process. Folks with chronic illnesses often have flare-ups and may need to reschedule or cancel an interview. I build trust with community members by being clear that their humanity, and health, always comes first. I also let community members know that they have the option to not answer any question I ask or to take a break upfront, a common practice in trauma-informed interviewing.
Make journalism accessible. Here, of course, I’m referring to the end product. Is the website screen reader accessible, for example? But I’m also referring to the process. I took a cue from Fiona Lowenstein — a reporter with long COVID and the founder of Body Politic, home to one of the largest long COVID support groups. They began asking all of their sources about what accommodations they might need upfront. This takes the onus off of the source and invites flexibility around interview format. With debilitating fatigue and brain fog, someone might not be able to have a phone conversation, but may be able to share their story in writing. This is one way in which I’ve been able to make my journalistic process more accessible. When we fail to create these accessible means of participation in the reporting process, we fail to be equitable and accurate in our reporting, leaving whole groups of people out.
It takes a village. I want to thank the team at THE CITY for supporting and allowing me to do this work with them, especially my MISSING THEM colleagues, Anjali Tsui and Melissa DiPento, who‘ve been incredible collaborators. I want to thank every community member who’s taken the time and energy to share their insights and experiences about living with long COVID. And, of course, I want to thank my professors and classmates at CUNY — and specifically the engagement program — for creating a container for this work. You’ve helped me think critically about how to do journalism in accurate, ethical and inclusive ways. I also want to thank friends, family, mentors and coworkers for checking in and cheering me on along the way.
Going forward, you can follow the project at thecity.nyc/missing-them or reach me at sarahaluft@gmail.com. Feedback welcome! I’m looking forward to continued listening, learning, and adapting as we strive to fill information gaps alongside New Yorkers with long COVID.
