Speaking Out: Researchers on Pandemic-Era Healthcare

Since March 2020, we have seen a drastic expansion in focus on the voices of healthcare professionals. Yet, as the COVID-19 pandemic continues to unfold, it is clear that these voices are just a few in a cacophony driven by panic, fear, and crisis. The sheer volume of pronouncements about the disease circulating—on social media, in the news, in policy initiatives—accompanies a host of fissures, faults, and failures: from willful political disregard of health professionals’ recommendations; to erasure of the most marginalized in decision-making; to widespread misinformation and mistrust. We approached researchers in diverse healthcare research fields—from Laura Rosella, an Associate Professor of Epidemiology in the Dalla Lana School of Public Health at the University of Toronto and member of the Ontario COVID-19 Modelling Consensus Table; to Queen’s University AI, Medicine, and Data Justice Postdoctoral Fellow LLana James; to harm reduction worker, advocate, and Community Scholar at the MAP Centre for Urban Health Solutions at St. Michael’s Hospital, Zoë Dodd—with two questions, asking them to reflect on the state of healthcare pronouncements in the era of COVID-19.

Laura Rosella: As an epidemiologist, I am used to providing a rigorous data-informed picture of the situation and having that information be used to feed into health decisions. Ideally this happens in a measured way, and the data is considered in the context of other considerations with transparency and open discussion. What has been very different during COVID-19, especially as it lingers on, is that there is such a quick reaction to data, and sometimes it is to support political goals versus the public health goals of health protection and promotion. The polarization keeps people from working together to bring the best ideas forward to get us through this, and ultimately hinders and slows down our response.

LR: For the most part, I do believe most of the population trust the expertise and dedication of the scientists and health professionals who have been working so hard to save lives and minimize the harm of the pandemic. However, there have been worrying reactions and backlash that I have not seen before. Frustration towards those health professionals and scientists that are dedicated to getting us through this is misdirected. Trust in each other, including scientists and experts, as well as government is one of the most important aspects of a safe and healthy society. When those relationships are being eroded or questioned, it obviously harms the response but also leads to many more societal issues. During a pandemic, things change quickly and there is a need for constant adaptation. My hope is that we find a path forward for rapid learning and adapting and working together for shared goals in a non-divisive way.

LLana James: My role has not changed during the pandemic, but visibility has. The pandemic narrative was constructed as if apps, AI, and data would end the COVID-19 pandemic in record time—unfortunately nothing could be further from the truth. Interestingly, as the value of data rose, the need to collect it was miraculously repackaged as a racial justice issue.11The Great Hack, directed by Karim Amer and Jehane Noujaim (2019, Los Gatos, CA: Netflix).

Many Black folks across the country were uneasy with race-based data demands—seeing it as more carding, surveillance by another name, masquerading in organizational Blackface.22Organizational Blackface refers to the practice of white staff, leadership, institutions, investors, or donors directing, creating, and using groups of Black people (or organizations) to make statements, start organizations, networks, collaboratives, or to take up seats on committees to protect white supremacist culture and sustain anti-Black racism. Organizational Blackface uses Black people and organizations against more progressive Blacks and allies, discredits claims of anti-Black racism, and generates enough press to dilute and drown out credible voices so that business can proceed as usual.It was time for a conversation. I pulled together a free, fulsome, online livestream called the COVID Conversations Symposium with moderated panel discussions, a live chat, and Q&A.33“COVID Conversations Symposium,” REDE 4 Black Lives, https://rede4blacklives.com/events/covid-conversation/.We discussed whether or not Black communities were sufficiently versed in and informed about the collection, ethics, and pitfalls of race-based data to give meaningful, uncoerced, informed consent.44LLana James, “Race-based COVID-19 data may be used to discriminate against racialized communities,” The Conversation, September 14, 2020, https://theconversation.com/race-based-covid-19-data-may-be-used-to-discriminate-against-racialized-communities-138372.Part of my role as a scientist is to bridge knowledge gaps and mitigate harm. This aspect of my role became more public as a result of the symposium, with thousands of Black people and non-Black folks participating from across Canada, as well as the Caribbean, US, and Europe. The top priorities that resonated with participants and contributors were achieving justice now—addressing known gaps in treatment, and moving forward using existing data and consent-based research to fill in well-defined gaps with focus on collective well-being from an anti-colonial lens. Due to popular demand we added additional episodes on requested topics with more to come in 2022.

Zoë Dodd: Working in harm reduction and overdose prevention, I am reflecting on how we are speaking the same truths over and over while so few listen—so little has changed. We haven’t had time to grieve the people we have lost; there have been so many. And people keep dying. Rest in peace Janet, Jenny, Kurtis, Caleb, Sketchy, Jerry, Slim, Snickerz, Sharon, Jonny, Randy, Damien, Mel, Tara, Shawn, Kaylee, Bella, Jessica, John, Michael, Shay, Janis, Tracey, Steve, Frank, Cuz.

This country was built on the disposability of human life—the colonial and capitalist project continues its expansion by ruling regimes who determine who is worthy of life. We were never “all in this together,” like the government mantra describes, in response to COVID. We’ve always known who is disposable: over 20,000 people have died in so-called Canada from overdose since 2016. No emergency has ever been called. Governments point fingers at each other, shifting blame, while seventeen people die a day.55Christopher Reynolds, “Seventeen Canadians per day died from opioids in 2020: Public Health Agency of Canada,” The Toronto Star, June 23, 2021, https://www.thestar.com/news/canada/2021/06/23/seventeen-canadians-per-day-died-from-opioids-in-2020-public-health-agency-of-canada.html.People are sleeping on the streets and in congregate settings in deplorable conditions that don’t meet shelter standards. Thousands are living in encampments while city officials claim they have safer indoor spaces, though people can’t get a bed when they call, and some go inside, only to die of overdose.

ZD: The many of us advocating for human beings’ dignity to live lives of a better quality have found ourselves in adversarial relationships with the political class since the start of the pandemic. They want to further criminalize those with so little, to erase their existence from public space. We have seen governments across Canada control and surveil poor people, pushing them into unsafe conditions where they could get sick with COVID and die.

The word “safety” is weaponized against people who are seeking safety with self-determination and autonomy. Violent encampment evictions—the paramilitary removal of people in parks—coerces them into shelters or back into invisibility. Indigenous, Black, and racialized homeless people are targets of this increased state violence.

Many who have died need us to fight in their honour and to ensure they are remembered as human beings. The overdose crisis—now a raging fire—cannot be doused with cups of water. COVID has shown us how governments can mobilize resources, but at the same time, has illuminated exactly who they are willing to mobilize those resources to support, and demonstrated a willingness to let the people they marginalize fall further through the cracks. We can’t go back, and we can’t go forward shouting into a void.