The worldwide quest is on for a vaccine to prevent COVID-19. Researchers at Rochester Regional Health and the University of Rochester, where two studies are taking place, have put out the call for volunteers.
Historically, scientific research has been a tough sell in Black and Brown communities. Dr. Angela Branche, co-director of the University of Rochester Medical Center Vaccine and Treatment Evaluation Unit, and Dr. Nancy Bennett, director of the Center for Community Health & Prevention, talk about the barriers that researchers face when recruiting volunteers and how they are trying to build trust. The conversation has been edited for space and clarity.
Is the outreach that you do based on phase of the trial – phase one when just starting the study versus phase three, the last part?
Branche: I think phase does matter lots of reasons. Historically, there is this mistrust of research in minority communities. Phase one, I can imagine that being the most worrisome for research subjects. And as an investigator, it’s certainly the most worrisome because we don’t know at that point what kind of adverse events we might expect.
When you move into phase three, you can be a lot more comfortable in telling people, I know it’s experimental, but don’t think about yourself like a guinea pig because we worked out a lot of the safety things in phase one and phase two. You’re really just helping us to understand if this vaccine protects or not. …
Does the outreach change based on phase of the study?
Branche: Phase one tends to be healthy people with no underlying medical illnesses at all. It doesn’t necessarily have to be racially, socially or ethnically diverse. Mostly you’re just looking for super super super healthy people … . In phase three you can be much more diverse in terms of people having stable underlying medical conditions. You also want to make sure (there are) different genders because vaccines do affect males versus females differently. Even though there’s not necessarily biologic reason why a vaccine should work differently in someone because of their race or their ethnicity, we don’t know that for sure. Given we expect the vaccine to protect equally across races and ethnicities, it’s always good to know that you’re vaccinating a population that’s representative of the group you’re hoping to cover.
If race and ethnicity are seen as social or cultural constructs, why would it matter to get a cross-section?
Branche: … I think it will generate a lot more trust in communities if we can say, well we tested this vaccine in a very diverse population and we saw protection across the board. I think having the research be linked to your ultimate outcome, which is to have a highly vaccinate population, is really important.
Trust, or ore accurately lack of trust, often is cited as a barrier to Black and Brown people getting involved in research. How are researchers on these studies trying to overcome that barrier?
Branche: People in Black and Brown communities would prefer to have a messaging they understand, that’s in the language familiar to them. They tend to trust their own community leaders … and organizations that are firmly planted in those communities rather than people from the University of Rochester who are never down there and never interacting with them and coming in and asking them to participate in vaccine studies.
They want to hear from Black and Brown investigators. They want to know that our research teams are diverse and have some better sense of their concerns. Their trust surrounding research itself, based on some of the historical things that have been done in Black and Brown communities over the years and … not being someone who is considered expendable or someone that society says you can expose them to risks.
How you do answer them when they ask about diversity among investigators?
Branche: I don’t have a good answer to that yet. I’m a black woman and I’m helping to lead these efforts and I have Black and Brown members of my team. … I built my team by picking people I like and trust. But I think that there is a place to be intentional about diversity. I can’t represent the whole Black and Brown community myself. I need foot soldiers and other study team members that can represent in an equally passionate way what we do.
Is this an opportunity to also recruit the next generation of researchers?
Bennett: One of the things we’ve been trying to do for years is exactly that. … doing projects that have community-based researchers on the project. … We have been successful in many cases. I think the other thing that we’ve also been attentive to at Center for Community Health and Prevention is this pipeline issue. … We’re more involved in working with the community than being responsible for diversity and inclusion in the institution. While that’s true, we’ve been trying to do a number of programs that bring more people of color from our community into the institution.
It sounds as though you can use recruiting for studies as a way to inform about career paths.
Bennett: What people tell me is that getting a job at the UR is really helpful for starting to move up. They may not become doctors and researchers but they may become study coordinators, lab technicians. … We need to invest in those programs because we’re not investing enough at this point. It’s critical. There are also programs that the university does sponsor that brings kids in to get interested in the health professions.
Now that researchers are asking for help with vaccines, is there sense that you have to overcome the fact that early on, there was little testing in minority communities and individuals may have felt ignored?
Bennett: That’s a complicated question, to be honest. Testing is still a problem in our community. We’re still trying to get New York state to put one of their testing sites in the city. (Asked about plans, a city spokesman emailed: “We consistently discuss with our state and county partners our response to the pandemic and how to best protect our residents.”) MCC is one of the few to get a free test. Drive through, that’s not so good for people who don’t have a car. Other testing places … it’s a medical visit. That’s a barrier for people who just need to get tested because they’re in an essential job … .
What are the goals of recruitment in the final phase?
Branche: We want our vaccination cohort in Rochester to reflect Rochester. It’s not an arbitrary number. We are looking at the statistics of Monroe County and the surrounding area. It’s 25% African American, Asian and Hispanic, all together. I think that would be a wonderful goal to reach. We’re not entirely confident we can, but if we could, that would be amazing.
How will you be trying to connect with people to inform them about the studies?
Branche: We tried to be as broad as we can within the limitations that people aren’t congregating very much. I think that people respond to people. … I think we still have to think through a little bit how we engage those communities a little bit more personally. … Whether we engage the community ourselves or we engage with the influencers who take the message back home to the folks they have contact with.