The Power of Patient Input in Clinical Trials: Building a Winning Enterprise Trial Finder

At the recent Patients as Partners in Clinical Research conference, we got pragmatic about why, when, and how sponsors should gather and integrate patient input into their trials. (Spoiler alert, there is a right way to do it!)

To tell both sides of the story, we brought on two leading patient advocates and two Sponsors to break it down for us. In this blog post, we’ll share the perspectives of two patients–Mackenzie Abramson and Patrick Gee–who were invited to share feedback with a Sponsor looking to reduce the burden on patients seeking clinical trial opportunities.

Mackenzie and Patrick are among the patients recruited by ProofPilot to provide structured feedback on a trial finder capability for a Sponsor using ProofPilot’s Study Finder platform. That’s right, we work with Sponsors to put that patient input into action!

Before diving into the questions, Joe gave some practical implementation steps in order to gather this kind of feedback. Among the things to consider: Recruiting patients starts with relationships, securing sponsor approvals and establishing FMV, and you must formally contract with patients—they're professionals, after all. The structure of the feedback is important, too, for compliance and legal reasons.  

With the practicalities covered, Joe displayed the enterprise trial finder website for the audience.

No doom scrolling here

Joe: I’d love to get your take on how you look at this website. What were you looking for, and how did you start to think about assessing it?

Mackenzie: Anyone who heard me speak last year at Patients as Partners knows I’ve spent countless hours on clinicaltrials.gov trying to find trials that I could participate in, and it is a doomscroll. So I was really excited about this project; what I was looking for was the opportunity to provide honest feedback but for what I’m looking for as a patient.

For me, ease of visual presentation is something I was looking for. When you go to a lot of trial vendors, you just see a lot of words thrown at you, so I love the use of icons and toolbars, and different colors that make it really visually appealing. I was also looking for relatability versus scientific communication. Although I’m in this space as a professional as well, when I'm wearing my patient hat, I want it to be super simple: I don’t want to have to read a full ten-page document to find out if I even qualify. 

Patrick: I was aware of the organization, but when I was looking at the website, the website had to read me before I read it. Just already knowing some of the questions I was going to ask, I could see that it kind of captured it as I continued to scroll. Each section that I went through was very patient-centric; it was a very plain-language summary.

There were surprises that I really didn’t expect, such as looking for clinical research and finding out that this organization was doing trials that I wasn’t familiar with. The simplicity of not only finding the trial but actually finding trial sites in your location, and a lot of them even know how many miles you are from them, the qualifications—it was, in my opinion, to where a child could literally go on that website and, if they were looking for a trial, could certainly find that particular trial all over the country.

Mobile vs. Desktop

Joe: Did you look at it in terms of the mobile interface on a phone versus desktop? Did one matter to you more than the other?

Mackenzie: I did look at both—on a desktop first and then my mobile. Usually when I am doom scrolling and looking at medical stuff, I open so many tabs on my mobile and then I transfer them over to my desktop and look at them there. What was really neat was when I was looking at this on my mobile, and then on my desktop, it didn’t change. There were no significant differences. The icons were still the same, the colors still looked great, everything was still centered and pretty, and the continuity of that just makes me trust that these people know what they’re doing—which is important to me, because when a site doesn’t do that from mobile to desktop to tablet, whatever different interfaces, it’s really frustrating. You’re like, “Do they actually care about what they’re doing?” which is an important question for me.

Striking a balance

Joe: Sometimes people are hungry for even more information. Do you think a website like this should have that deeper dive, or would you go to other sources for more information like that?

Patrick: In my opinion, everything that was on the website needed to be on the website. Sometimes if you go too deep you get in a rabbit hole, and certainly get misinformation and kind of lead those that are looking for a trial astray, almost to the point that you intimidate them and they don’t want to participate. The more simple you keep it, it’s perfect. If they need to do a deep dive, they can certainly go to other areas.

Mackenzie: We talked about that every patient is unique, so the optionality is also really important to me. Like I said, I am a professional in this space as well, so I like the simplistic view to make that initial gut reaction that maybe this is something I want to explore further—and then there were spaces, as Patrick said, as you continue to go on that sort of naturally answer the questions that I was looking for. That was really great, because I think allowing that optionality for each unique patient is really important, and it also provided us options to connect with someone. There were places where it said, “Look here for more info” or “Click to talk to someone,” that I think are also really good options.

The bottom line

Even every meaningful conversation must come to an end, but in true ProofPilot fashion, we wrapped it up with a nice bow. Joe’s final question? A fill-in-the-blank “Always do this, or never do this.”

Mackenzie: Always treat patients as partners, never as subjects.

Patrick: Always treat a person as human before you treat the affliction.

It’s that simple!

Intrigued by the patient feedback on this trial website? Learn more about our Study Finder.

In the next blog, we’ll share the scoop from two Sponsors working diligently to incorporate more patient input into various touchpoints across their trials. Stay tuned!