Findings from StuffThatWorks’ Barriers in Clinical Trials Survey

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: Could you tell our audience a bit about the Barriers in Clinical Trials survey and highlight some of its most noteworthy findings?

Elish: I would just love to take just a few minutes to give context on the platform on which this was done and why we got into doing that. The survey was conducted by StuffThatWorks and StuffThatWorks is the company that I founded and I'm the CEO of and StuffThatWorks is a crowd sourcing platform that allows collection of crowd sourced data from patients with chronic conditions at scale and in organized numbers. The reason I started this company was from personal experience, where I was taking care of my daughter and my dad, and I realized that there is not enough information about what happens in the real world with patients. While you have a lot of clinical trial information about treatment outcomes, or generally medical information about conditions, it's very different from what actually happens in the real world. It's very different in terms of how treatments really work and impact people and different people and all that. Because I came from Waze, prior to that, I was in the founding team of Waze, I thought that crowdsourcing is really ideal for collecting data at scale, and the point being not discussion data, like in groups and discussion boards, but transforming that into real, organized, structured data that you can analyze and do stuff with. In essence, it's almost like transforming survey data at the base of it into structured data consistent across all conditions. We now have about 3 million patients across 1,250 conditions, chronic conditions. At some point, since pharma is our target market as a business model, we decided to dive into this issue of, why is it that clinical trials are constantly facing a major problem with recruiting patients by asking patients what are the barriers for participation? We conducted this survey where we have basically questioned patients across all 1,250 conditions with about 35 questions, and received a really, really amazing, interesting data that I think highlights a lot of what on what needs to be done in the industry.

Ross: Just to build on what Yael is saying, as the data came in on the survey, some of the most noteworthy things that come out are that the majority of patients, their individual doctors do not discuss clinical trials with them. The survey had 6,000 respondents, and 97% of them said their doctor is not discussing clinical trials with them. The majority of those individuals knew what clinical trials are all about, and they're extremely interested, like 93% of them are very interested in hearing about clinical trials, and yet it's not happening. I think we have to start to ask ourselves, why not?