Fox Chase Cancer Center Builds a Community Engagement Foundation for Trials

How is Fox Chase engaging with underrepresented groups to raise awareness of clinical research?

One strategy we have employed is training lay community ambassadors on the clinical trial history, process, barriers to participation and patient protection measures that are in place. These ambassadors then go out and disseminate the information amongst their networks. Another way we collaborate with our ambassadors is when we hold community dialogues. During these sessions, we ask one of our ambassadors who have participated in a clinical trial to join a physician on a panel. I interview both of them and allow the audience to ask the panel questions. We talk about the informed consent process, how they came to the decision, etc., with the goal of imparting information from the perspective of someone who has been in a trial.

We’re also looking at other ways to engage, such as working with networks of community. For example, right now one of our behavioral researchers has a study to develop a curriculum for couples going through the breast cancer journey. We actively promote these studies at educational events or on our community Facebook page. You never know what is going to hit or what people will be interested in. 

"We helped patients understand the importance of being represented."

You are also doing work in the community using mobile screening units. How does that allow you to engage more closely with patients?

Fox Chase has had a mobile screening unit for over 30 years providing breast cancer screenings, and we are in the midst of obtaining a new mobile screening unit. Our new unit will have an examination table so we can expand our screening services. We’ve also added a phlebotomy chair so we can support our research enterprise. Specifically, we can provide education about medical research and increase access to biospecimen participation.

Several years ago, we successfully implemented biospecimen study. Through the informed consent process, participants learned the purpose of the study which was, in part, to increase representation from diverse populations. We helped them understand the importance of being represented. After we discussed the aims of the project and health disparities, we asked if they would be willing to provide a sample (saliva or blood); 95% of the people we spoke with gave us a sample; 65% gave blood.

What do you think made the difference between someone donating versus not?

We believe that once we helped them understand the research aims to improve representation and how we could gain more information from a blood sample, most were willing to give blood (65%).

Another important factor is not just going to the community when you need something from them. Here at Fox Chase, the model the Office of Community Outreach utilizes is building long-term partnerships. Our team has worked with our community partners on other unrelated projects, the people at the church we were working with for this study had seen us before. You have to be visible, flexible and at times work on unrelated projects that have little to do with cancer.

“Here at Fox Chase, the model the Office of Community Outreach utilizes is building long-term partnerships. Our team has worked with our community partners on other unrelated projects, the people at the church we were working with for this study had seen us before. You have to be visible, flexible and at times work on unrelated projects that have little to do with cancer.” 

You were a part of the development of a framework to address cancer care disparities. How did you get involved?

I met Jeanne Regnante of LUNGevity through our Merck partner. She had reached out to me several years ago, looking to address the issue of diversity in clinical trials. She was interested in bringing individuals from around the country together to provide recommendations or strategies that other centers could implement. Through roundtable discussions with cancer centers from around the United States, we developed a framework that we believe will address barriers within the cancer spectrum that can negatively impact patients.

We then turned our attention to community engagement. If people aren’t seeking healthcare due to social determinants of health such as lack of insurance, language barriers, transportation, low health literacy – how do we begin to address those issues? How do we help the community understand and demystify clinical research and address their perceptions of research, especially given some of the past abuses that have transpired?

How are you changing that perception through community engagement?

Community engagement plays an important role not only in helping the community understand health and health systems, but staff working with the community can educate CCC staff on how to work more effectively with diverse communities. We can identify where the cancer burden is in our catchment area, which populations are disproportionately affected, and then directly identify key stakeholders in those communities to work with.

If we can come to that community and say, “Did you know how much higher liver cancer is in this community?” that makes a difference. We’ve tailored it to what is happening in your specific neighborhood. We can engage those stakeholders in those discussions, including the role of research and participation in clinical trials. If you can get the stakeholders, the people that have the greatest influence on those community members, to understand what you’re doing then they are more likely to support that effort.

"It’s a time investment, staying connected. But it’s a matter of “When they call, you better be ready to respond,” because if you cannot find a way to work with that partner, you’ve lost them."

What is a lesson you’ve learned about engaging with key community stakeholders?

You have your own agenda, but the reality is that it may not be their agenda. You might have to meet them where they are first, before they’re willing to work with you on what you want. Building trust is really critical. What it requires is time and presence. For example, I reached out to a stakeholder, January 2020, which was right before COVID. Pretty much everything shut down the next two years, which makes it difficult because people are more closed off, or – when things go virtual – many people don’t have broadband access or computers, let alone how to navigate all the platforms. They are not always computer savvy so virtual can’t be the only option. But then, four weeks ago, that stakeholder reached out to me. It’s a time investment, staying connected. But it’s a matter of “When they call, you better be ready to respond,” because if you cannot find a way to work with that partner, you’ve lost them.

For more information on Patients as Partners, visit patientsaspartnersconference.com.