RECOVER Representatives inform Long COVID research through authorship

Representatives help RECOVER take an innovative approach to authorship

Representatives created an authorship system within RECOVER, partnering with researchers to write publications describing RECOVER studies and their findings. This system gives Representatives the tools they need to partner with researchers in the writing process and be recognized as co-authors of RECOVER publications.

In August of 2022, Representative Leah Castro and RECOVER researcher Gelise L. Thomas proposed the authorship system to RECOVER’s Health Equity Committee. “We used our own time to develop an SOP (standard operating procedure),” explains Leah, a Community and Caregiver Representative, NCEG Co-Chair, Co-Lead of the NCEG Publications Subcommittee, and a journalist of over 20 years. “We wanted to make sure Representatives are heard and that our lived experience informs RECOVER’s research. The Committee was so blown away by the solution we presented that they helped bring it to the attention of the NCEG.”

With the support of RECOVER’s Clinical Science Core, the Publications team from NYU Grossman School of Medicine, and the NCEG Co-Chairs, the authorship system was finalized, advanced, and approved at the beginning of 2023. Since then, Representatives have co-authored 33 RECOVER research publications. Representatives are currently involved in drafting and revising another 99 RECOVER research manuscripts (publications in progress) for submission to peer-reviewed scientific journals. Through their involvement in this authorship system, Representatives are helping RECOVER achieve three important goals:

1) Promoting knowledge-sharing. Representatives bring unique expertise to RECOVER. As Patient Representative Rebecca Letts explains, much of that expertise comes from personal experience. “Many people living with Long COVID—myself included—have had to educate themselves just to figure out what medical help they need, how to communicate those needs, and how to get that help,” she says. “We were searching for answers to questions about our symptoms and this condition before many scientists were.”

Leah adds that, by sharing knowledge like this with scientists leading RECOVER research, Representatives can help them improve their studies. “The science of lived experience isn’t academic science, but it’s just as important,” she says. “It adds a different layer to RECOVER’s research and its results.”

At the same time, the authorship system gives Representatives additional opportunities to learn more about how the RECOVER research process works. According to Community Representative and NCEG Inaugural Co-Chair Brittany D. Taylor, Representatives can then use those learnings to help advance a broader understanding of Long COVID and its effects. “My involvement as a co-author helps me share RECOVER’s progress in real time,” she says. “I’m often working in communities where there’s not a lot of awareness about Long COVID and encountering individuals who tell me they’re experiencing symptoms,” she explains. “My involvement as a co-author gives me more opportunities to say to these community members: ‘What do you know about Long COVID? You might want to look at this research or go to the RECOVER website, which houses many resources to learn more about this health condition.’”

2) Including patient and caregiver perspectives. Many Representatives are also people experiencing or caring for someone with symptoms of Long COVID. Their perspectives inform RECOVER research and help ensure that studies and their findings remain patient centered. This aspect of RECOVER’s research is crucial, as Long COVID can affect everyone differently. From Leah’s perspective, one of the main goals of the authorship system is “to get to a space of equitable harmony—a place where you can feel everyone championing inclusion and no one has to ask for it.”

Patient Representative Kian Nguyen also highlights this aspect of the authorship system. “I’m a young adult and college student, and I feel that people my age are the shifters of the future,” he says. “Being able to share how Long COVID is affecting my generation’s physical and mental health helps move RECOVER’s research forward.”

3) Conducting studies responsibly. Rebecca emphasizes that, because of Representatives’ membership in Long COVID communities, they can help researchers recognize when a manuscript includes language that could be harmful to people experiencing Long COVID. “Some words are less appropriate and accurate than others,” she says. “Those words are often associated with ideas that can cause problems for patients.” For example, some words can suggest that people living with Long COVID should not be taken seriously or believed when they describe their symptoms. These doubts can be especially harmful when they are expressed by health care professionals because they can discourage people from seeking care. These words can also make some people living with a chronic (long-lasting) health condition like Long COVID feel more isolated (alone), which can have a negative impact on their mental health.

Representatives work on studies that reflect their interests

Most RECOVER Representatives pledge to contribute to at least three RECOVER publications per year. But some Representatives, like Leah, may be working on up to 15 publications at any given time. The NCEG Publications Subcommittee helps assign Representatives to publications that match their interests.

Representatives are interested in many aspects of Long COVID and RECOVER research. For example, Rebecca has contributed to publications about RECOVER’s pediatric observational study, which share findings about Long COVID’s impact on children. “I have Long COVID myself and associated conditions, but I also have a child with Long COVID. So, I try to participate in pediatric publications as much as possible, especially now that they’re getting more specific,” she relates. “I want to help be a voice for kids with Long COVID. Children have less of a voice to begin with, and it can be hard for them to talk about what they’re experiencing. They need adults who know what they and their families are going through.”

Brittany has a different set of interests. “I’m interested in all facets of Long COVID. However, I can say Long COVID and its effects on vulnerable populations are on the higher scale of my interest,” she shares. “I’m very interested in studies that help ensure equitable research methods and treatment options for patients.” As she has become more involved in RECOVER research by serving as a co-author and member of the Clinical Trials Data and Safety Monitoring Board, Brittany has also developed new interests. These include the effects that COVID-19 reinfections can have on people already living with Long COVID and the changes Long COVID can cause in the bodies of pregnant women and their babies.

In most cases, the Publications Subcommittee also ensures that at least three Representatives have an opportunity to contribute to each publication. For RECOVER’s adult observational studies, the Publications Subcommittee will match at least four Representatives to each publication: two Representative co-authors and two Representative reviewers. If a study is investigating a sensitive topic (such as a study on the impact of Long COVID on mental health), the Publications Subcommittee will likely match additional Representatives to that publication.

Representatives get involved early in the writing process

After RECOVER researchers submit a request for Representatives to help with a publication, Representatives can respond by expressing their interest in a given publication.

According to Leah, the goal is to get Representatives involved in the writing process as soon as possible. “Once the Presentations and Publications Oversight Committee (PPOC) lets researchers know their topic is approved and they can begin writing, we begin matching,” she says. “Representative co-authors need time to review the topic, ask the researchers questions, and get on the right path to making valuable contributions."

Rebecca agrees. “At the beginning, we're often helping with planning the design of the paper. We’re asking questions about what’s important, how we look at the data, what we’re going to do with that data, and what our overall goals for the publication are,” she says. “We also help identify sources—other publications—that can help flesh out our research.”

To support this level of engagement, RECOVER also offers extensive training and support materials for Representatives who may be new to the publication process. These include authorship guidelines, frequently asked questions (FAQs), a learning hub, a writing academy led by NIH’s Community Engagement Alliance Consultative Resource (CEACR), and a mentorship program.

Representatives make many different contributions to RECOVER publications

Representatives have the same opportunities to contribute to RECOVER publications as any other co-author. RECOVER follows the authorship guidelines established by the International Committee of Medical Journal Editors (ICMJE) in defining different levels of authorship.

Representatives receive recognition in a publication’s “Acknowledgements” section if they make any of the following contributions: 

• Share ideas that help shape the research topic or study design.
• Write language for or entire sections of a study publication.
• Read and provide feedback about the publication.

Representatives receive recognition in a publication’s “Authors” section if they make all of the contributions listed above and they: 

• Participate in the approval of the final version of the publication.
• Agree to take full responsibility for the publication’s quality and accuracy.
• Agree to help answer any questions reviewers outside of RECOVER may have about the publication or the study.

RECOVER has also taken steps to remove any barriers to Representatives sharing their experience and knowledge with researchers. “I have so many opportunities to express my viewpoint and share my ideas,” Rebecca explains. “I can do it verbally in a meeting. Often the comments I share that way will go straight into the manuscript. And that can happen multiple times throughout the process. I can also send an e-mail or write a suggestion in the notes section of the manuscript. I can even add to the manuscript and ask others for their feedback.”

For their part, RECOVER researchers co-authoring publications with Representatives pledge to:

• Explain how they address and incorporate Representative feedback.
• Give Representatives enough time to write and review publication content.
• Ensure meetings provide opportunities for Representatives to ask questions and provide feedback.
• Regularly communicate with Representatives about the status of publication drafts, revisions, and acceptances by scientific journals.

Researcher and Chair of RECOVER’s Pregnancy Cohort Coordinating Committee Dr. Torri Metz (University of Utah) has collaborated with Representative co-authors on multiple publications. She describes her co-authorship experience as both valuable and rewarding. “Community engagement is becoming more and more emphasized in the scientific world because it can help drive the work in a more meaningful direction,” she says. “Within RECOVER, that means being more attentive to the issues that really matter to people who are affected by Long COVID. By sharing what they know and what they want to know, Representatives help investigators like me really hone in on the things that can make a difference in patients’ everyday lives. And that’s allowed me to feel more connected to the research and better understand its impact.”

Representatives continue to focus on the impact of RECOVER publications

RECOVER’s efforts to understand, diagnose, prevent, and treat Long COVID are primed to make even more progress in the coming year. New discoveries will lead to even more manuscripts, giving researchers and Representatives more opportunities to collaborate on producing publications that are valuable to people affected by Long COVID as well as the larger scientific community, policymakers, and healthcare providers. As Kian responds when asked about the most rewarding aspect of authorship: “Being heard. I’m excited to continue giving a voice to the voiceless.”

Rebecca has already seen how much being heard in this way can make a difference. “I bring the publications I’ve worked on to the places where they’re needed,” she says. “That could be a pediatrician’s, school nurse’s, or congressperson’s office. The publications help me get attention and explain that this research is something they can use. It can help doctors care for their patients experiencing Long COVID. It can help connect chronic illness communities to the services they need.”  

“Being a Representative co-author helps me stay motivated to share all of the outstanding work that’s going into the research to provide relief for people living with Long COVID,” Brittany adds. “A lot of this research takes time, because anything as data driven as RECOVER takes time. But I hope keeping people aware of the findings being published helps them understand that the work is continuing—that the research is evolving and we’re constantly learning.”

Explore the range of RECOVER publications the Representatives featured in this story have contributed to:

• Leah Castro
• Rebecca Letts
• Kian Nguyen
• Brittany D. Taylor