Virginia Brown, Andrew Yockey, and Philip Schnarrs. Submitted photos.
Nonprofit institute awards $1 million for two-year study
by Edwin Smith
A University of Mississippi professor is collaborating on a new study that aims to strengthen the relationship between universities and their community partners with a long-term goal of improving health care research and delivery.
The Patient Centered Outcomes Research Institute, known as PCORI, has awarded researchers a two-year, $1.5 million grant to conduct the study.
R. Andrew Yockey, assistant professor in the Department of Public Health at Ole Miss, is among the research team. He references the infamous Tuskegee Syphilis Study – where African American men were withheld treatment to study the disease – and the CIA’s Project MK-Ultra – where unknowing citizens were given hallucinogens to study mind control techniques – as examples of projects that have negatively influenced society’s trust in research.
“For example, in my research, which is focused on LGBT+ health, epidemiology and substance use, lesbian, gay, bisexual and transgender communities have a deep mistrust with the research community, thereby hampering research progress to benefit these at-risk communities,” Yockey said. “I really want to know why these communities do not trust researchers and how to better understand their needs and wants when it comes to trust.”
The study begins to develop definitions of trust and trustworthiness between universities and the communities they serve. It also will develop scales about trust and increasing partnerships in the community, he said.
Yockey and Phillip Schnarrs, an incoming professor at the University of Pittsburgh School of Public Health, will develop their own scientific measure of trust. That data point will then guide the team on how to increase trust within the community.
To develop the metric, they will conduct focus groups seeking to answer: “What does trust mean?”
“Our goals are to lay the groundwork for a philosophical approach and understanding of trust and trustworthiness and to increase community-engaged research in all communities,” Yockey said. “We aim to go after further funding testing these constructs in different community settings.”
Virginia Brown, research scholar at The Hastings Center, is the study’s lead investigator. She said the project looks at why people might or might not trust organizations doing research. It will also address how that perception influences their decision to engage with the research.
“You cannot re-establish trust when it has never been established,” Brown said. “The historical and continued mistreatment of under-resourced and minoritized communities by these organizations has contributed to widespread mistrust in them.”
The PCORI is an independent, nonprofit research funding organization that seeks to empower patients and others with actionable information about their health and health care choices. The organization funds patient-centered, comparative clinical effectiveness research and research-related awards, providing funding opportunities several times each year.
The Hastings Center addresses social and ethical issues in health care, science and technology. Its research is carried out by interdisciplinary teams that engage in a rigorous process of analysis, deliberation, framing and reframing of the key issues at stake.
“It is our hope to investigate what trust looks like in all communities so we can increase partnerships to promote and advance health equity,” Yockey said.
