Oregon Health & Science University is working on a new approach to studying the spread of COVID-19 after health-care experts from Oregon’s communities of color raised concerns that the original project’s design was flawed by racial biases.
“We are prepared to include community leaders at every level of study, from leadership to study design, and shared decision making,” said David Bangsberg, dean of the school of public health that’s jointly run by OHSU and Portland State University.
The Key to Oregon study, a project by Oregon Health & Sciences University and the Oregon Health Authority, aims to survey 100,000 Oregonians and monitor them for COVID-19. One of the original goals was to recruit large numbers of participants from communities of color, to help identify outbreaks in those areas. But critics said the study would recruit few, if any, participants of color, because of flaws in the study design. They said those flaws could have been avoided if experts from communities of color had been included from the beginning.
“[Study leaders] in this situation, because they didn’t know to center community in a real meaningful way, recognizing that community has expertise and wisdom that deserves to be elevated to the level that they see themselves on,” said Kelly Gonzales, a professor at OHSU-PSU school of public health and one of the experts who pointed out shortcomings in the study. “These researchers are learning about humility.”
“They said we should have reached out to them from the beginning, and they were right,” said Bangsberg, who said the plan was always to include communities of color.
“This type of engagement is as important as engaging the governor,” he said.
The decision to redesign the study came after several community leaders wrote to OHSU detailing their concerns. After several listening sessions, OHSU agreed to integrate experts from community organizations at all levels of the study, and late last week they held the first in a series of meetings aimed at re-centering equity and including communities as they rebuild much of the study from the ground up.
Another change: now, their community partners will be reimbursed for their time and expertise. “We recognize that everyone we talked to is engaged in really important and essential work. To ask people to do more requires us to compensate people for their time,” said Bangsberg.
Completely redesigning a study — particularly one as large as this one — is very rare. The study — which has a budget of $24 million — was already underway. Recruitment had already begun. And with COVID-19 cases in Oregon increasing, particularly among Latino and Black people, time completing the study as soon as possible will better-inform policies and strategies to slow its spread within communities of color.
OHSU says it plans to move forward with anyone who has already agreed to enroll in the study, while it works on building engagement in communities of color.
“We’re hoping for input from our community partners as to what additional recruitment strategies we need moving forward, what type of modifications to the design they think would be helpful,” Bangsberg said, but “we plan to continue with the people who have enrolled.”
But that was news to Andres Lopez, the research director for the Coalition of Communities of Color and one of the public-health experts now partnering with OHSU researchers on the study. “They haven’t communicated that to us at all,” said Lopez, who thought recruiting had been halted, and says transparency was one of the asks community leaders had before agreeing to partner with OHSU.
Bangsberg later clarified that recruitment had been halted entirely, and that OHSU would still provide testing and symptom monitoring to those who had already chosen to participate.
Gonzales says she’s cautiously optimistic about the study moving forward. “The dean and management are learning humility. They’re learning how to see the communities they serve from a place of strength, and as having something to contribute. They’re learning they don’t have all the answers.”
Lopez said that “cautiously optimistic” would be a good way to describe his feelings about the partnership with OHSU.
“They’ve apologized, and have acknowledged the ways in which white supremacy culture has informed their decisions and strategies. And they are intent on learning different ways to power-share, and to co-create the rest of the study with communities of color,” Lopez said. But rebuilding a study takes time, which there isn’t much of, and Lopez worries that communities of color will end up being excluded again. He wants to make sure there are steps to ensure transparency and accountability.
Among those working on the project, there’s a feeling that they’re taking part in something historic, and that if this study is successful, it can serve as a model for equitable design. “[Communities of color] are leading this co-construction of a partnership. And we’re excited to share more about where this commitment leads us in the next few weeks, as we iron out the details.”