When Science Meets Real-World Struggle
Every year, the promise of new therapies often stalls because of one often-overlooked factor: it’s too hard for people to participate. Protocol complexity is rising. Study visits are long, logistics are daunting, but development teams feel stuck with these obstacles. “Maybe it won’t be too bad?”
Participation burden isn’t theoretical. It’s quantifiable, impactful, and—most importantly—preventable.
Seeing Burden Before It Becomes a Barrier
Protocol burden is not a vague feeling—it’s a measurable mismatch between standard of care and evidence creation in research settings. Adding to the complexity, participant experiences vary widely: what’s manageable for one person may be exhausting or inaccessible for another. Burden also compounds. For patients with rare conditions or limited resources, study complexity layers on top of a higher foundation of condition burden and sometimes hidden financial, physical, time, and emotional tolls.
Designing with Participants, Not Just for Them
As the lead for this year’s DIA Global session on participation burden, I’m proud to convene a panel that’s not just talking about the problem—we’re working toward actionable change. Come and hear about the Tufts CSS participation burden assessment and impact. Join us to see study participant feedback questionnaire results and hear from lived experience experts and advocates about how we should interpret these signals.
Bring Your Questions
Whether you're designing first-in-human trials or managing a late-phase portfolio, you have a role to play in reducing participation burden. I invite you to join us at our DIA 2025 forum:
“Addressing Participation Burden in Clinical Trials: Evidence, Participant Feedback & Signal Interpretation to Drive Impact.”
Let’s stop accepting burden as inevitable. Let’s start treating participant experience as the operational strategy it truly is.
📍 Attend the session: View on DIA Program Site
📩 Have questions or want to connect before the event? Email me or schedule a 15-minute meeting
