By John Seaner
Why Clinical Trials Are Failing Patients and How a PXO Can Help
Every year, pharmaceutical companies invest billions of dollars into launching clinical trials. Teams of professionals plan meticulously: aligning protocols, validating sites, securing regulatory approval, and initiating multi-channel recruitment. On paper, the trial is a go. But operational readiness often masks a deeper flaw: patient unreadiness.
Despite sophisticated infrastructure, nearly 80% of clinical trials still miss enrollment timelines. Retention rates in many therapeutic areas hover below 50%. Minority and underserved populations are routinely underrepresented. Sites report rising patient confusion, while consent rework and protocol deviation continue to slow studies down.
What’s behind these failures?
Most sponsors are still operating with a 20th-century mindset: that trial enrollment is a function of eligibility and awareness. If a patient qualifies and knows about the study, the assumption follows that they’ll join. That assumption is wrong. Clinical trials fail because the patient decision experience is fractured.
Enter the Patient Experience (PX) model: a radical rethinking of how trials engage, enroll, and retain patients by treating the experience itself as operational infrastructure.
The Missing Infrastructure Beneath Trial Participation
What happens between the moment a patient hears about a trial and the moment they show up for their first visit? Most sponsors can’t answer that with any precision. And yet, this is where 60–70% of patients fall out of the process. It’s not that they don’t qualify. It’s that the process itself makes it hard to say “yes.”
Let’s break it down:
Emotional resistance: Fear of the unknown, mistrust of sponsors, anxiety about randomization or placebo
Cognitive overload: Confusing consent language, technical terminology, unclear logistics
Social uncertainty: Lack of family support, caregiver pushback, or uncertainty about impact on work/school
Procedural friction: Inconvenient visits, travel concerns, burdensome assessments
These are not marketing problems. They’re decision design problems. And they require a system that supports informed, confident, and timely choices.
What Is a Patient Experience Organization (PXO)?
A Patient Experience Organization is not a communications vendor. It is not a recruitment agency. And it is not a UX consultancy. A PXO is a strategic operating partner that embeds behavioral science, health literacy, and human-centered design across the clinical trial lifecycle from initial outreach through post-trial engagement.
At Jumo Health, our PX model is built around three core pillars:
Behavioral Science:
Applying the science of choice to frame information, nudge action, and reduce decision fatigue.
Health Literacy & Comprehension:
Simplifying complex medical language through layered, multimodal content formats.
Human-Centered Design:
Creating emotionally and cognitively supportive experiences aligned to the lived realities of patients, caregivers, HCPs, and site staff.
This system is not an add-on. It is embedded across protocol design, recruitment strategy, consent development, visit planning, and even post-trial communication.
Common Trials, Common Failures
Let’s take an example from a common condition, type 2 Diabetes.
A sponsor launches a Phase III trial targeting adults with suboptimal A1c control. The study is well-resourced, IRB-approved, and distributed across 70 sites in North America.
Despite this, enrollment is slow. The issue?
- Patients are already receiving care and aren't desperate for alternatives.
- Outreach materials assume low health literacy but use vague value propositions.
- Consent packets overwhelm with jargon and bury the practical details.
- Site staff, stretched thin, are unable to walk patients through decision-making.
The result is high screening interest, low conversion, and even lower retention at midpoint.
Now compare this with a PX-powered trial.
The PXO Difference: Real Trial, Real Outcomes
In a similarly designed diabetes trial, a PXO was engaged to build and implement a PX framework. Key interventions included:
- Decision Pathway Mapping: Visual decision flows that clearly explained trade-offs (e.g., extra visits vs. tighter glucose monitoring)
- Segmented Messaging: Tailored outreach for newly diagnosed vs. long-term patients; Spanish-first materials for key sites
- Comprehension Validation: Interactive “teach-back” modules during consent to ensure patients understood participation expectations
- Behavioral Nudges: Follow-up SMS and email nudges timed to when drop-off risks are highest (24–72 hours post-screening)
The result?
increase in screening-to-enrollment conversion
reduction in V2 no-shows
increase in visit adherence at midpoint
Significantly lower screen-out due to misaligned expectations
From Campaign to System: How PX Shifts Recruitment Strategy
Traditional recruitment views the process as a funnel, casting a wide net, qualifying leads, and passing them to sites. A PXO views it as a journey, a behavioral process with identifiable stages and inflection points.
Recruitment Funnel
Awareness
Interest
Pre-Screen
Consent
Enrollment
Retention
PXO Journey Framework
Emotional Readiness Assessment
Cognitive Comprehension of Trial Commitments
Social Feasibility Mapping
Motivation Reinforcement
Relationship and Trust Continuity
Emotional Readiness Assessment
This change in thinking leads to different strategies, tools, and metrics. Instead of counting leads, a PXO tracks patient clarity, consent quality, motivation index, and dropout risk across personas and timepoints.
Impact Beyond Patients: Sites, Caregivers, HCPs
A PXO doesn’t just improve patient-facing touchpoints. It benefits every stakeholder in the clinical trial experience.
- Fewer repeat explanations of protocol procedures
- Faster eligibility assessments due to pre-clarified expectations
- Lower burnout and higher compliance
- Confidence that referred patients will receive understandable trial information
- Reduced back-and-forth between clinics and coordinators
- Shared resources for patient explanation and follow-up
- Custom caregiver guides and expectation management tools
- Support in emotional decision-making
- Consent processes that acknowledge family dynamics and burden
Metrics That Matter
The PX model introduces new categories of operational measurement that traditional feasibility assessments ignore:
- PXCI (Patient Experience Composite Index): Measures clarity, emotional readiness, comprehension, and trust
- IEQS (Informed Engagement Quality Score): Tracks depth of consent understanding and alignment with values
- RRS (Retention Risk Score): Predictive model using engagement behavior to forecast dropout likelihood
- PAM Shift (Patient Activation Measure): Captures how empowered patients feel over time
These metrics are not just vanity stats. They correlate strongly with:
Time to full enrollment
Visit compliance
Cost per retained participant
Post-trial brand perception and referral rates
Why Clinical Operations Should Care
Clinical operations leaders are being asked to do more with less: faster timelines, leaner budgets, higher diversity targets, and zero tolerance for rework.
PX is not a communications add-on. It is a force multiplier. It reduces recruitment waste, improves data quality, and prevents mid-study derailments caused by patient confusion or regret. In an era of decentralized and hybrid trials, where personal connection can fade, PX restores clarity and trust as core operating principles.
If Patients Can't Navigate the Journey, the Trial Can't Win
Clinical trials are no longer just scientific experiments. They are human systems. And like any system, they require coherent design, predictive insights, and adaptive support.
The Patient Experience model gives sponsors a way to compete, not just for patient attention, but for patient commitment. It’s not a nice-to-have. It’s an operational imperative. If your next trial depends on smarter, faster, more reliable patient engagement, Jumo Health is ready to deliver. Let’s talk.
