You probably know the feeling of sitting around a conference table – or perhaps a virtual one – and enjoying the satisfaction of coming up with what seems like a truly good idea. It’s new and innovative. It ticks all the boxes and, on top of that, there’s consensus in the room.
Full steam ahead, right?
Not exactly. Keeping CSL’s promise to patients includes admitting when our idea of what patients need or want is wrong.
After all, patients are the experts on being patients and they’re experts in knowing what it’s like to live with their rare and serious conditions. And they are also the intended beneficiaries of our possibly great, possibly not great, ideas. So that’s why on two recent occasions, we changed course after getting patient input.
It changed the way we’re approaching support systems for patients who are interested in joining clinical trials. It even changed the template for our informed consent form (ICF), the important document participants receive about the trial’s potential benefits and risks. We made it shorter and more concise, which was appreciated because these documents can run 20-40 pages. But patients told us they wanted something more to help them understand the expectations of participation – even if it lengthened the consent form. We look forward to rolling out a new ICF template to study teams later this summer.
Also thanks to patient feedback, our Project Promise team changed direction from what they thought would be a great participant-decision-support tool to one that is a better match to what patients said they wanted in a clinical trial experience.
What have we learned? That there’s no substitute for patient feedback. One of the highest priorities for the patients we surveyed was understanding expectations for the time commitment and travel associated with traditionally structured trials. Here’s how one patient put it: “The more convenient and the closer to home the better, because there are other people in my circle that I have to be around for.”
Their extensive comments were incredibly useful because they told us what should be at the top of our priority list. Not a digital platform, but a real person to help them navigate clinical trials. Not just a shorter consent form, but one that addresses their questions using language that feels honest, welcoming and clear.
It took time, yes. But had we rolled forward with our own in-house ideas, what would have happened next? I can picture the downbeat meeting that likely would have followed with everyone asking why our big ideas didn’t resonate with patients. That would have been followed by rework that would have taken more time than the initial planning.
Instead, we invested the time to change our process and include patients at a formative stage. Our revised initiatives now reflect the lived experience of patients with all its complexity and nuance. Years ago, we might have said including patients in the process was “extra work.” Today it’s essential work.