Clinical Trials Are Not Patient-Centric—They’re Sponsor-Centric With Better Marketing
We keep saying “patient first,” but what we really mean is: “patient convenient… as long as it fits the protocol.”
Let’s rip the Band-Aid off.
“Patient-centricity” in clinical research is a brilliant tagline.
But in practice, it’s mostly smoke and mirrors—polished slide decks, compliance copywriting, and a few apps that make consent forms look like iTunes terms and conditions.
We’ve sold ourselves on a feel-good phrase while quietly building a system that prioritizes sponsors, timelines, and data integrity far above patients' lived experiences.
Let’s talk about it.
1. “We put patients first.” No, we put endpoints first.
Every protocol begins with a question:
How can we prove efficacy and safety fast enough to hit our milestone?
Nowhere in that kickoff meeting do we ask:
What is the patient actually experiencing?
If the answer aligns with the trial goals—great.
If not? Well, we tweak the eligibility criteria, toss in a PRO measure, and keep it moving.
2. We claim to reduce patient burden—then bury them in diaries, visits, and follow-ups.
We build decentralized trials, add wearables, ship ePRO tools… but still force patients into 12 visits, 3 blood draws, and daily diary entries on a glitchy tablet.
Call it what it is: protocol-driven participation, not patient-driven design.
We “engage” patients by asking them to rank pain on a scale from 1 to 10.
But we never ask if the trial design is something they’d even say yes to in real life.
3. We say we want diversity, but we make it harder for the people who need access the most.
We host DEI webinars. We publish reports. We pat ourselves on the back.
Meanwhile, trials are still centralized in urban areas. Materials are still English-only. Compensation is often an afterthought.
Here’s a reality check: If you’re a single parent working two jobs, living 90 minutes from the nearest site—you’re not in that study.
We aren’t eliminating barriers. We’re outsourcing them to patients and calling it empowerment.
4. “Patient advisors” are often just window dressing.
We love a good advisory board—especially when it comes with a quote we can plug into the protocol:
“It’s great to see patients included from the beginning.”
But here’s what’s really happening:
We ask for input after the protocol is finalized.
We ignore any suggestion that delays the timeline.
We turn real stories into recruitment taglines and forget the humans behind them.
It’s not patient engagement.
It’s selective listening dressed up as collaboration.
5. True patient-centricity is messy—and most sponsors don’t want messy.
It means:
Changing how we define success.
Admitting some trial designs are more convenient for the sponsor than the patient.
Allowing patients to co-design studies, even if it slows enrollment.
We don’t want that.
We want the appearance of partnership without sacrificing control.
My Final Thought:
Patient-centricity without power-sharing is just PR.
If we’re serious about transforming clinical trials, we must give up some control—which scares people.
True centricity means we stop being the centre of the story.
Until then, let’s call it what it is:
Sponsor-centric trials... with better branding.
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