Efforts to build equity into health research projects can fail, despite good intentions. For instance, Oregon Health & Science University has halted a COVID-19 research project after failing to recruit a representative cohort of historically disadvantaged populations in Oregon.
In response to Oregon’s first reported cases of COVID-19, OHSU launched the Key to Oregon research study on May 1 to help local leaders better track, test and map the prevalence of COVID-19 across the state. Since that time, the pandemic has continued to present new questions, its public health implications have changed, and community needs have increased. “Though more than 10,000 Oregonians joined the study, the participant group does not represent these communities in the way necessary to best understand the impact of the virus,” a statement noted. “OHSU decided to end the study to ensure the best use of state funding and limited long-term resources.”
Gov. Kate Brown announced in May that the Key to Oregon research study would seek to enroll 100,000 randomly selected Oregonians to voluntarily provide essential data that can be used to inform decision making at the county, regional and state level. The study’s goal is to help get people back to school and work faster, while effectively managing the potential for future COVID-19 outbreaks.
Starting May 11, an OHSU research team began tracking the temperatures and other COVID-19 symptoms of all study participants. The information gleaned from this study was to be applied broadly across the state in real time.
A subset of up to 10,000 randomly selected study participants were to be provided home testing kits to provide better data about prevalence of asymptomatic infection, and prevent wider spread in the community and the state.
The goal was to report results to the Oregon Health Authority to assist with contact tracing and home isolation of those with positive tests. An initial investment of $6 million was committed by the State of Oregon to help fund this study.
On its website, the research team acknowledged that Key to Oregon study organizers should have done a better job engaging Black, Indigenous and people of color communities — as well as other historically disadvantaged populations including, but not limited to, Latinx and Hispanic, Asian and Pacific Islanders — as the study was being designed and launched. This oversight led to concerns that the study would be unable to answer important questions for the most-affected communities.
Moving forward, OHSU said, the BIPOC Decolonizing Research and Data Council, an alliance of community member-based scientists, advocates and leaders representative of some of the communities most impacted by COVID-19, and a partner on the Key to Oregon study, is in conversations with the Governor’s office and the Oregon Health Authority about co-creating next steps that center racial equity. A key focus will include strengthening the connection of data, data collection and research as a tool towards social and racial justice to mitigate COVID-19 impacts to communities.
The partnership with the council “has enriched OHSU’s understanding of the gaps in research, education and healthcare that have historically perpetuated racial and ethnic inequities,” the Portland-based academic medical center said. “OHSU acknowledges that the institution is just beginning its engagement with this important work and there is much more to be done.”
