Leading with the Patient Voice

In a recent video interview with Applied Clinical Trials, Yael Elish, founder, CEO, StuffThatWorks; and Julie Ross, president, CEO, Advanced Clinical, discussed results from the Barriers in Clinical Trials survey conducted by StuffThatWorks. Key challenges identified by the survey include lack of physician communication, patient education, and the complex recruitment process. Elish and Ross highlighted how the findings can be used to streamline processes and leverage patient data to improve clinical trial recruitment.

ACT: What implications will the Barriers in Clinical Trials survey results have on the clinical research industry?

Ross: We've known for decades that patient recruitment is the number one challenge with clinical trials. We talk about the data, we see the data. We now have data directly from patients through the StuffThatWorks platform where you can engage with patients directly that are saying, “I, no matter where I live, want to participate in clinical trials. I have a need. I've exhausted other avenues. My physicians are not bringing these opportunities to me. When I raise it, physicians will impact the way that I view the clinical trial.” We have enough data now and enough direct patient insights that it is time for us to change how we're running clinical trials. It is time for us to lead with the patient's voice and restructure the way we conduct clinical trials. Looking at it through the lens of the patient, I want, and I believe and trust in my primary I want opportunities, no matter where I live, to clinical participate in clinical trials. It's upon the industry to solve for that, and the time is now.

Elish: I second that very much, and I think that one of the biggest problems is the disconnect between access to patients and access to patient data. There is a total lack of access to patients. Every time you have to recruit patients from scratch, there's no way to really identify or advertise to patients online, because Google, Facebook, they self-regulate, and then you have to screen patients all over again because you don't really have their data. They're coming without data, so they have to be screened, and then their medical records have to be downloaded, and the information and screeners and the whole process. If you have access to patients at scale, and together with their data, this is a kind of game over, because you now know already who is eligible, you know where, and you just need to reach out to them and as we said before, I think, be in a respectful, ongoing conversation with patients and be involved. Have the primary care physician, the doctor, the immediate doctor be on board with the process, because that's probably the key issue here.