Long Covid & Society

Sessions

9:30-9:45 am: Check-In and Coffee

9:45-10 am: Introductions and Welcome Remarks

We would like to encourage in-person participants to get to know one another, and have virtual participants contribute to a word cloud of issues that they would like for the speakers to address during today’s proceedings.

10-11:15 am: First Session: Lessons for Long Covid from Other Patient Groups

Emily Lim Rogers (Duke University), JD Davids (CUNY), Andre Luiz Sica de Campos (University of Campinas), Abigail Dumes (University of Michigan), Moderator: Gil Eyal (Columbia University)

In this session, we will explore the experiences of other patient groups, such as ME/CFS, HIV/AIDS, Zika, Lyme, and more. What lessons can we learn from these experiences for Long Covid? What can we learn about the effect of these other diseases on marginalized communities for Long Covid? What are some tactics and strategies that we can learn to gain recognition and awareness? Are there alliances and bridges that can be built between Long Covid and other patient groups? To what extent is the category of infection associated chronic conditions helpful?

11:15-11:30 am: Break

11:30-12:45 pm: Second Session: Global Perspectives on Long Covid

Pierre Robicquet (Mines Paris – PSL), Renan Leonel Gonçalves da Silva (New Jersey Institute of Technology), Yanze Yu (Columbia University), Ilana Lowy (CNRS), Moderator: Larry Au (CUNY)

While Long Covid’s biology may remain constant, what the illness represents and what it means to be sick with Long Covid can differ drastically across social, political, and economic contexts. This session examines how social institutions shape the experience of Long Covid in different countries, drawing on experiences from France, Brazil, and China. How is the experience of Long Covid shaped by institutional context? What are some policies and practices that have benefited Long Covid patients, and can they be implemented elsewhere?

12:45-1:45 pm: Lunch

1:45-3 pm: Plenary Session: Learning from Patients, Scientists, and Clinicians

Cynthia Adinig (CYNAERA/BIPOC Equity Agency), Teresa Tindle Akintonwa (Black Covid-19 Survivors Alliance), Wes Ely (Vanderbilt), Ian Simon (former Director, HHS Office of Long COVID), Julia Moore Vogel (Scripps/Patient Led Research Collaborative), Kat Varga (Cornell), Moderator: Abigail Dumes (University of Michigan)

During this plenary session, we want to hear from patients, scientists, and clinicians and see what questions and problems they would like social scientists to address when it comes to Long Covid. This session will be centered on questions such as: How can the lived experiences of patients inform clinical care, scientific research, and policymaking? What are some ways that we can promote and respect the experiences of individuals living with Long Covid? How does Long Covid intersect with other social inequalities in the lived experiences of patients?

3:00-3:15 pm: Break

3:15-4:30 pm: Third Session: Advancing Inclusion and Trust in Long Covid Science

Emily Mendenhall (Georgetown University), Melina Sherman (University of Central Florida), David Scales (Weil Cornell), Kelly Sealey (Patient Engagement Expert), Gil Eyal (Columbia University), Larry Au (CUNY), Moderator: Cristian Capotescu (Columbia University)

Patient voices have not always been included in discussions about research in Long Covid, to their detriment. Yet in order to produce trustworthy knowledge about Long Covid, patient experiences and expertise is needed. What can be done to harness the knowledge and expertise of patients to advance Long Covid science and medicine? How can we promote trust and inclusion in interactions between patients, clinicians, and scientists?

4:30-5 pm: Closing Discussion

We would like to break the audience up into small group discussions on things that they have learned during the day, and other things that they would like to learn more about down the road. The core research team is currently in the middle of their three year project studying Long Covid and society, and would appreciate input on topics and areas that they should investigate.