Incorporating Patient Voices: Leah Eshraghi’s Mission to Enhance Clinical Trials through Advocacy and Inclusion
Author: Katherine Cornish
Leah Eshraghi (Patient Advocacy Associate Director, Precision Oncology for Exact Sciences) wants to bring the patient voice into every aspect of clinical research. Is that a lofty goal? Yes. Is she doing it? Also yes.
All of the work that Leah does for the Precision Oncology side of Exact Sciences centers around being that connecting bridge between patients or advocates and the internal teams at Exact Sciences, a company that works to support early cancer detection and smarter treatment decisions. Exact Sciences might be known for their genomic diagnostic tests, but they should also be known for their clinical trial participant diversity efforts.
With the help of Leah and her team, Exact Sciences is able to amplify the voice of the patient and ensure that it is brought into each aspect of clinical trial design and execution. “We advance patient care and outcomes by serving as a liaison between the patient community and the company,” she shares as she describes her role. “We’re providing resources for the education and activation of the patient community around precision oncology and ensuring the needs and perspectives of cancer patients are incorporated into any corporate initiatives for all precision oncology products,” says Leah. Some of the efforts led by her team include educational webinars, educational materials, advocate training programs, and health equity work.
“It all comes down to including the patient voice from the beginning… You have to create a trial that is something people want to participate in.”
Leah mentions some of the approaches used in their Voice of the Patient program, including having patient advocates review informed consent forms, protocols, and other patient facing materials. “We want to make sure that we’re developing trials that patients want to participate in, that we’re focusing on answering questions that are important to patients,” she explains. “We want to make an impact in clinical trials as early as possible.” She highlights that her team is able to bring in patients as early as study concept – patient voice is a key driver from start to finish.
Underlining the desire to ensure that Exact Sciences’ products are beneficial for everyone who may need to use them, Leah dives into the importance of clinical trial diversity. “When we’re doing this work and getting the patient voice, we want a diverse group of people providing input. We don’t want everyone to be from the same backgrounds,” she says. “We really want to make sure that the trial is something that people from all different populations are going to look at and want to participate in. It’s incredibly important for these trials to be diverse so that when we have a tool, we’re able to show that this tool is applicable for everyone,” continues Leah. In discussing the future of clinical research and trial diversity, Leah notes that “we can’t have progress without participation.”
When asked about the most fulfilling aspect of her role, Leah lights up. “What I love is when I see the impact that the advocates are making. Seeing the input and the feedback that the advocates provide turn into changes to a protocol, a consent form, or a recruitment flyer,” she shares. For Leah, harnessing the patient voice to effect change is a reason to get out of bed every day, to log on to work, and to keep going. “If there’s a new test, we have to think about how we can best educate patients about it. What do patients want to see? What are they interested in? And we let the patients provide that feedback to guide us.” Leah also highlights the internal changes that she gets to see: “It’s great when other people throughout the organization are introduced to the function of patient advocacy and how patient advocates play a role in these efforts. We end up with this great partnership throughout different arms of the organization saying ‘yes, I want this feedback and we’re willing to take action.’”
It’s about inclusion from start to finish, Leah notes. Bringing trials that are designed with diverse participants in mind to those very participants. “It all comes down to including the patient voice. Including it from the beginning in trial development – what it’s going to look like, where it’s going to be, where the sites are, who you’re working with. This is all so important to have from the very beginning. You have to be open to that input and that feedback. You have to make those changes. You have to create a trial that is something that people want to participate in.”
