What is the work you are leading at Fenway?
Currently I’m the Director of Community Impact and Engagement. Previously, I was the Community Engagement Manager for Fenway Institute, which is the Research Policy, Education and Training Division at Fenway Health, leading the community engagement, community education and recruitment of our clinical research studies.
"I see someone choosing, or even thinking about engaging in, research as a union. That’s what builds trust and security and supports the foundation that will allow for continued engagement and research."
Can you tell us about the mobile health unit Fenway Health utilized for your COVID-19 vaccine trial?
We had the opportunity to do the AstraZeneca COVID-19 research study. AstraZeneca offered us the opportunity to have a mobile unit deployed to reach communities that had difficulty reaching us, and communities that we haven’t been able to access as easily before such as Lynn, MA. In Lynn, we found a community that was filled with enthusiasm and excitement; the resource just needed to be there.
Tell us more about the community’s response in receiving an opportunity to participate in a COVID vaccine study?
There were diverse feelings. Some folks said, “I don’t want to be a part of that.” Others said, “Wow, I can have this opportunity? I would love to do it.” We had so many referrals from people who said, “Not for me, but I think this person would like it.”
Initially, we were all getting a lot of different, rapidly changing information about the pandemic. This created an opportunity to have conversations with people in the town. “I heard this on the news; what did you think?” Or people asking, “Since you’re in this role, tell me more about this.” It allowed for a lot of opportunities to do some education around COVID and other issues. So even on days where we didn’t enroll anyone for a study, we were able to educate so many different people.
What was key about the success of that mobile unit in Lynn?
Strategically, we were right next to Lynn Community Health Center. The idea was that we did not want to be “Fenway Health,” coming into an area, and when we left, someone wouldn’t know where to go. We wanted to be close to where the resources are, so we could say, “We’re here because we have this opportunity right now, and we are going to continue research and relationships, but there are great permanent resources in your local area here.”
We used the visibility of the mobile unit next to the Lynn Community Health Center to uplift and amplify the resources that were already in the community.
How are you engaging patients to propose clinical research as an option for them?
We are engaging them through our Electronic Health Record (EHR). Prior to COVID, we had our staff engaging people in the waiting room.
We also want to reach people in the community who are either not currently part of our patient population or for whom our site might not be as accessible. We often do this by working with community partners such as the Multicultural AIDS Coalition. We’ve partnered with them on many occasions to engage folks in the work that we’re doing.
"AstraZeneca offered us the opportunity to have a mobile unit deployed to reach communities that had difficulty reaching us, and communities that we haven’t been able to access as easily before."
What is the process of identifying and approaching a patient from the EHR?
We have established a protocol of how we reach out to patients once they’re identified in our EHR. Typically, we look at who’s coming in for an appointment in order to connect with their provider to say, “We see this person might be a good candidate for this research study and we see that you’re meeting with them. In your conversation with them, and with the trust you have, can you bring this up? I will also be on call and am happy to come down and speak with this person.”
That’s typically the approach we propose. Sometimes we hear from the provider, “This person is not going to want to hear from me; it would be better if you just text them,” so we actually have protocols in place for texting patients.
We found, especially during the pandemic, that it is sometimes better received to send a text versus setting up a video call. We’ve received a lot of good reactions just from saying, “This is who we are. We are excited to engage with you. This is why we think you might be interested in this study.”
We like to seek information from the provider to gauge how best to approach and engage with patients using trusted relationships that already exist. If this is someone who has other providers outside of their physician, we may try to connect with them as well.
Can you give an example of forming a relationship and building trust with a community group?
As part of Fenway Health’s mission, we center Black, Indigenous and People of Color and other underserved communities. We do this not just by providing health care, but also as a focus of who we’re trying to engage in our research. For example, we’ve supported the Ball community in Boston. Balls date as far back as 1860, with the purpose of bringing people together from the LGBTQ+ and BIPOC community so they may heal, learn and relax, and have fun in a safe environment where they can freely express their true selves. We frequently attend their events both as a way to distribute information and also just as participants to show that we’re being a supportive part of their community. Because of that, I have friends now that I can say, “It was great going to that event. Let me share a study with you.” It is about creating those relationships.
Having worked in community engagement, what would be your advice or best practices for pharma groups doing this work?
I would say two things. One is bidirectionality. I see someone choosing, or even thinking about engaging in, research as a union. Some element of that relationship needs to be involved when engaging with them. That’s what builds trust and security and supports the foundation that will allow for continued engagement and research.
The other is by having community at the table when research protocols are being written and having community “build” the table by encouraging principal investigators and pharma professionals to be representatives of the community. It requires thinking about how we can bring the community into the industry, what programs we can provide, such as continuing medical education, etc.
For more information on Patients as Partners, visit patientsaspartnersconference.com.
