Building Partnerships for Trust and Equity in Health Research
On November 17, Dr. Nancy Mendenhall, COMPPARE Principal Investigator, and Charles Griggs, Minority Engagement Group Coordinator, participated in a special panel discussion entitled “From Principles to Practice: Building Partnerships for Trust and Equity in Health Research” during the 7th annual meeting of the Patient-Centered Outcomes Research Institute (PCORI). “This year’s virtual meeting [was] a tremendous success,” said Denese Neu, PhD, MS, PCORI Engagement Officer. “Our powerful programming and strong attendance have…surpassed all expectations.”
Introducing the special panel, Dr. Neu commented that the COMPPARE study team was invited to participate because of its “commitment to health equity to the involvement and enrollment of Black men, a population often excluded because of discrimination, or reluctant to participate in health research because of historical injustices.”
The discussion focused on the ways in which COMPPARE was able to build inclusion, equitable partnership, trust, trustworthiness, and accountability to surpass its goal of 10% minority patient accrual, reaching an outstanding 15%.
“One of the words you will hear me say often is ‘intent,’” said Mr. Griggs (shown top row, center). “Once you are intentional, everything else becomes a matter of lessons learned and commitment. The thing that most impressed me about Dr. Nancy’s approach to the study was that when the partners from our patient stakeholder/engagement groups spoke up and said, ‘This is what we believe,’ Dr. Nancy went to her team of researchers and said ‘Okay, we have got to find a way to make this happen.’”
“It is really important to start the process long before you begin to recruit,” Dr. Mendenhall (shown bottom row, far right) pointed out, “because it takes time to build trust. When a cancer patient has a diagnosis, they want those answers right away. So, we had representatives from a number of different organizations that, one way or another, had already gained trust of African American men either through websites or advocacy groups. We used all of those to disseminate information and get endorsement and trials in a way that Black men could access.”
Mr. Griggs also discussed the significant role that health care failures have played in the lack of trust among minority patients. “Every time [Black men] provided an indicator, whether it was asthma, heart disease, etc., we were at the bottom of the list,” he pointed out. “Black men are twice as likely to die from prostate cancer than their white counterparts. So why would they have any trust in the system that has provided nothing for them? That is where education comes in.”
“If you are part of the process, you are more likely to trust the process,” he concluded. “That is what we try to do with COMPPARE.” The presentation will be available for viewing soon on the PCORI website. For more information, visit https://www.pcori.org/2021-annual-meeting.
Reprinted with permission from comppare.org.