National Center for Cultural Competence Director Tawara Goode conducted a pilot study earlier this year exploring the impact of “Truth and Reconciliation” community forums on overcoming barriers to racial and ethnic participation in the health care system. The study also noted ways to restore trust in the research community after various injustices over the past century.
The study, conducted in association with the Georgetown-Howard Universities Center for Clinical and Translational Science, brought 29 people to the community forums held in Washington, D.C., in January and May 2014.
Goode researched whether the forums could reduce ethnic research barriers.
“What I did with this research was to formulate a question that looked at barriers to participation in research — and this is by racial and ethnic groups other than non-Hispanic white — can they be reduced by truth and reconciliation forums,” Goode said.
Participants completed questionnaires before and after the forums, revealing reluctance to participate in studies that required overnight stays in hospitals or the usage of experimental drugs.
According to a report of the experiment presented by Brian Clark of the Catholic University of America, a research intern on the experiment, the four main themes that emerged from the study were fear of and lack of trust toward the research community, lack of knowledge or information about research and a lack of inconvenience of the study or logistical issues.
Goode and the other researchers are still analyzing the data from the study after completing the pilot research, but according to Clark’s report, the research found that “respondents were less willing to participate in studies the more invasive the procedures.”
The January forum focused on acknowledging past wrongs carried out by the research community during the 20th century. It addressed the Tuskegee syphilis experiment in which African Americans sharecroppers participated in a government study of syphilis but were never informed that they had the diseases, as well as the unknown usage of cells from Henrietta Lacks to conduct medical experiments.
During the session, Goode and the other researchers issued an apology on behalf of the research community. Participants then looked at the safeguards in place to prevent any discrimination by researchers.
“I was absolutely shocked — just blown away,” participant Allyson Coleman said after learning about the research injustices, according to a press release from the Georgetown University Medical Center.
At the May forum, participants looked into disparities in the District and how those disparities influence D.C. residents, then brainstormed how to overcome these barriers to research that exist in communities.
Goode said that community members are often unaware of ways to get involved in research besides simply participating as a subject, pointing to help with data collection and writing of articles to spread information as other potential areas of contribution.
“There is not this one way that you can participate in research. It is very empowering that you can participate in different ways,” Goode said.
Goode hoped to receive additional funding to conduct the Truth and Reconciliation Forums on a larger scale than the original 29 participants. Goode said that her study has significant implications and warrants further research.
“We need to know whether or not apologies can make a difference,” Goode said, “I think that the other thing is that when you engage communities in such dynamic forums, that you demystify research, that you break down some of the barriers between people you want to participate in research and those research institutions.”