How PXO Unlocks Enrollment
By John Seaner
Rare Disease, Rare Opportunity:
How A PXO Unlocks Enrollment and Equity in Ultra-Orphan Trials
Rare disease trials are often characterized by a single assumption: smaller patient populations mean simpler studies. Fewer patients, fewer sites, faster timelines, right?
Wrong.
In truth, rare disease trials are among the most complex and fragile studies in the clinical development pipeline. These trials face challenges in:
- Patient identification.
- Diagnosis delays.
- Eligibility barriers.
- Trust gaps.
- Care coordination.
- Long-term retention.
And the most dangerous assumption of all? That rare disease patients are eager to participate simply because they have limited options.
This underestimates the emotional, logistical, and psychological weight of participating in research for a condition that has historically been ignored, misdiagnosed, or misunderstood.
As a Patient Experience Organization (PXO), Jumo Health understands these challenges. And our PX model provides an answer: a structured, behaviorally intelligent system for engaging rare disease patients and caregivers with empathy, clarity, and trust.
In this post, we explore how this PX model transforms rare disease trials from high-risk recruitment efforts into inclusive, scalable, and ethically sound enrollment ecosystems.
The Rare Disease Recruitment Crisis
There are over 7,000 rare diseases, yet less than 10% have FDA-approved treatments. Many rare conditions are ultra-orphan, affecting fewer than 1,000 patients worldwide.
Despite this urgency, the numbers paint a bleak picture:
-
- Average diagnosis delay: 5–8 years
- Screen failure rates: Up to 60% due to narrow eligibility or comorbidity exclusions
- Trial awareness: Rare disease patients are 3x less likely to hear about trials than those with common conditions
- Retention drop-off: As high as 45%, especially in trials with intensive protocols or long durations
Traditional recruitment strategies fall short. Why?
Because for rare disease patients, participation isn’t just a clinical decision, it’s a deeply personal, often traumatic milestone. Many patients are being asked to trust an industry that’s ignored them for decades.
Our PX model is built to repair that trust and convert it into sustained participation.
Rare disease patients don’t arrive at trial participation casually. Their journey is long, nonlinear, and emotionally turbulent.
The Rare Disease Decision Journey: More Than Just a “Yes”
Key phases include:
Symptom Suspicion:
Years of misdiagnosis, false hope, and frustration
Diagnosis Event:
Relief, grief, and identity shift
Search for Options:
Peer forums, advocacy groups, and medical tourism
Encountering Research:
Skepticism, confusion, and guarded optimism
Decision-Making:
Navigating unclear benefits, potential risks, and family concerns
This journey often includes caregiver triangulation, insurance fights, and medical gaslighting. By the time a patient hears about a trial, they are emotionally and cognitively spent.
The PX model honors that reality by designing support systems for the entire decision journey not just the enrollment moment.
PXO in Action: A Custom Framework for Rare Disease Trials
We deliver activation for rare disease trials through 5 integrated layers:
1. Trust Architecture
2. High-Context Clarity
3. Caregiver Integration
4. Decentralized Support Infrastructure
5. Continuity-Driven Retention Systems
Let’s explore each.
1. Trust Architecture
Rare disease patients often enter the trial conversation with a trauma-informed mindset. They’ve been dismissed, misdiagnosed, and underserved.
A PXO builds trust using:
Lived Experience Storytelling: Patient and caregiver narratives integrated into trial education materials
Transparent Framing: Clear articulation of knowns, unknowns, and the purpose of the study
Motivational Congruence Mapping: Aligning trial goals with what patients value (e.g., slowing decline, being heard, helping others)
Co-Created Content: Resources developed with rare disease advocates, not just medical writers
In one neuromuscular disorder trial, PXO-based trust tools increased enrollment intent by 47% among families previously disengaged from research.
2. High-Context Clarity
In rare disease trials, clarity isn’t just about simplifying language, it’s about contextualizing every detail for a patient population with unique lived realities.
A PXO addresses this with:
Disease-Specific Visual Consent Guides: Tailored to illustrate how the trial may impact progression, daily life, and caregiver support
Treatment History Mapping Tools: Helping patients visualize how trial participation integrates with current regimens, devices, or assistive technologies
Benefit-Risk Positioning Grids: Presenting what’s known about the investigational therapy in the context of current standard of care (or lack thereof)
Decision Dialog Templates: Scripts and tools for family conversations, especially in conditions affecting minors or cognitively impaired adults
The result? Patients and caregivers feel prepared, not pressured, leading to higher-quality consent and fewer early withdrawals.
3. Caregiver Integration
Most rare disease trials involve proxy decision-makers such as parents, spouses, or legal guardians. Yet many trial designs treat caregivers as bystanders.
A PXO repositions them as co-pilots, with:
Parallel Education Tracks: Separate but aligned materials for patients and caregivers
Caregiver Burden Planners: Tools to visualize time, travel, emotional, and financial impact over trial duration
Emotional Resilience Guides: Supporting caregivers in managing hope, guilt, fear, and grief throughout the study
Logistics Coordination Modules: Simplifying transportation, visit scheduling, and communication with schools or workplaces
This isn’t just ethical, it’s operational. Trials that engage caregivers retain patients longer and experience fewer protocol deviations.
4. Decentralized Support Infrastructure
Rare disease patients often travel hundreds of miles to access care. Many live in rural or medically underserved areas.
A PXO builds distributed access pathways with:
Tele-Consent and Tele-Coordination: Enabling participation without geographic restriction
Home Health Visit Toolkits: Visual and procedural materials for mobile nurses and phlebotomists
Digital Visit Prep Engines: Interactive modules that simulate visits, so patients know what to expect even if the site is far away
Remote-Ready ePRO Systems: Designed for ease of use across age, tech literacy, and cognitive function
This decentralized approach expands access while reducing dropouts driven by travel fatigue and logistical overwhelm.
5. Continuity-Driven Retention Systems
Rare disease patients are often in trials for months, even years. Many studies include open-label extensions or post-market observational arms.
A PXO delivers long-term retention through:
Visit Milestone Recognition: Behavioral nudges that reinforce progress and contribution
Personalized Information Refreshers: Updates that re-explain trial goals, procedures, and importance as context shifts
Care Continuity Coordination: Supporting transitions between trial care and routine clinical care
End-of-Trial Transitions: Preparing patients and families emotionally and medically for what comes after the study
In a pediatric lysosomal storage disorder trial, PX interventions led to a 66% improvement in end-of-trial visit attendance compared to sponsor benchmarks.
Metrics That Matter
A PXO tracks rare disease trial performance using:
- Patient Decision Readiness Score (PDRS): Measures emotional, informational, and logistical readiness pre-consent
- Caregiver Confidence Index (CCI): Assesses caregiver understanding and support capacity
- Equity Access Score (EAS): Monitors trial reach across geographic, socioeconomic, and racial demographics
- Behavioral Retention Probability (BRP): Predicts dropout risk based on real-time engagement signals
These metrics allow clinical operations teams to intervene early and optimize continuously.
Why Clinical Operations Must Lead the Shift
Rare disease trials can’t afford waste. Every patient counts. Every visit matters. Every dropout jeopardizes the study.
PX optimization is not a “nice-to-have.” It’s a mission-critical system that delivers:
Faster enrollment
Higher consent quality
Lower screen fail rate
Longer retention
Greater data equity
Higher regulatory confidence
Conclusion: Respect Builds Results
Rare disease patients are not desperate, they’re discerning. They’ve waited years for this moment. And when they agree to participate, they’re not just volunteering, they’re advocating.
A PXO ensures that this act of advocacy is met with respect, clarity, and support at every touchpoint. If your next rare disease trial can’t afford enrollment delays, protocol amendments, or mid-study attrition, let’s talk.
Designing for Childhood, Not Just Compliance:
By John Seaner
Designing for Childhood, Not Just Compliance:
The PXO Blueprint for Pediatric Clinical Trials
Pediatric clinical trials carry one of the most complex engagement burdens in all of clinical development.
You’re not just recruiting a patient.
You’re recruiting:
- A child.
- A caregiver.
- A family system.
- Sometimes a school, a social worker, or a community network.
And you’re doing it against a backdrop of ethical sensitivity, emotional uncertainty, and regulatory scrutiny.
Operationalizing that complexity requires more than child-friendly graphics or simplified language.
It requires a system built to activate and sustain trust across multiple decision-makers, each with different emotional stakes, informational needs, and practical concerns.
That’s where Jumo Health’s Patient Experience (PX) system delivers unmatched value.
Why Pediatric Trials Fail to Engage
Despite advances in protocol design and site training, pediatric trials remain among the slowest to enroll and hardest to retain.
Consider the barriers:
Parental fear of exposing a child to unknown risks
Low trust in industry-led pediatric research
Limited direct benefit since rare disease patients are 3x less likely to hear about trials than those with common conditions
Burden on family logistics (travel, time off work, childcare for siblings)
Site challenges in managing pediatric consent/assent workflows
Lack of child-centric communication tools that account for developmental stages
And then there’s the unspoken emotional calculus: “What if I say yes, and something goes wrong?”
These aren’t just emotional hurdles. They’re operational failure points if not proactively addressed.
Our PX Model Reimagines Pediatric Trials as Family-Centered Systems
Jumo Health does not treat pediatric participation as an extension of adult engagement.
We treat it as an entirely separate decision ecosystem, one that requires specialized behavioral strategies, co-designed content, and a deep respect for caregiver psychology.
Our PX model for pediatrics includes 4 foundational layers:
Child Activation:
Developmentally tailored education, visualization, and choice-making tools
Caregiver Confidence:
Messaging, scripting, and resources that reduce guilt, fear, and ambiguity
Family System Enablement:
Tools for sibling support, school coordination, and social context planning
Site Adaptation:
Consent/Assent journey maps, training modules, and PX dashboards designed for real-world implementation
Let’s explore each in depth.
1. Child Activation: Meeting Kids Where They Are
Children aren’t mini adults. Engagement must respect their cognitive, emotional, and social development levels.
A PXO approaches pediatric activation with:
Story-Based Visual Consent Tools: Illustrated guides that use characters and narratives to explain what participation will feel like, not just what it is
Age-Specific Comprehension Checkpoints: Ensuring understanding through art, play, and dialog, not passive forms
Gamified Visit Previews: Helping younger children visualize what to expect at each visit using friendly animations and milestone badges
Emotional Scaling Tools: Allowing children to express fear, worry, or confusion using emoji-based check-ins
In one pediatric oncology trial, a PXO improved initial assent comprehension by 72% and reduced refusal rates by 39% at high-volume sites.
2. Caregiver Confidence: Reducing Fear, Building Trust
Parents and guardians are the ultimate gatekeepers. They are also the most emotionally burdened stakeholders.
A PXO supports caregivers with:
Decision Companion Guides: Plain-language documents that explain what questions to ask, how to talk to children, and how to evaluate risk
Benefit-Risk Framing Tools: Neutral but supportive frameworks that show what’s known, what’s unknown, and what matters for their child
Emotional Timeline Coaching: What caregivers can expect to feel (and when) during the trial, from decision guilt to mid-trial fatigue
Parallel Communication Tracks: Materials tailored separately for mothers, fathers, grandparents, and guardians based on segment research
One study on neurodevelopmental disorders used PX-based caregiver modules to reduce consent withdrawal by 44% in the first 3 months.
3. Family System Enablement: Engaging the Whole Household
Participation impacts the full family ecosystem.
A PXO addresses:
Sibling Explainer: Simple age-appropriate guides that help siblings understand what’s happening
School Collaboration Toolkits: Support for absences, documentation for educators, and behavioral management guidance
Remote Participation Planning: Solutions for telehealth, flexible visit scheduling, or hybrid participation when travel is a barrier
Caregiver Employment Support Templates: Letters for employers explaining trial schedules and caregiver responsibilities
This ecosystem approach transforms participation from an isolated medical decision to a sustainable, supported family choice.
4. Site Adaptation: Operationalizing Pediatric Patient Experience
A PXO doesn’t stop at the patient and caregiver. It equips sites with:
Consent/Assent Workflow Maps: Distinct tracks for different age groups and caregiver types
Role-Play Scripts and Video Training: Teaching coordinators how to respond to fear, confusion, or ethical hesitation
PX Dashboards for Pediatric Trials: Live data on comprehension, drop-off risk, and emotional readiness
Localization Support: Materials tailored to community norms, language, and cultural expectations
In a global pediatric asthma study, site-reported stress during consent sessions dropped by 61% after PX rollout, and time to full consent/assent completion decreased by 42%.
PXO Metrics in Pediatric Trials
Jumo Health measures pediatric patient experience performance using:
- Pediatric Engagement Readiness Score (PERS): Indicates overall readiness and emotional state of child and caregiver pre-enrollments
- Assent Comprehension Index (ACI): Measures child understanding in age-specific brands
- Caregiver Confidence Score (CCS): Tracks how informed and supported caregivers feel across the trial
- Participation Fragility Index (PFI): Redirects risk of mid-trial withdrawal due to family system stress
These scores allow for proactive intervention and transparent ROI tracking.
Beyond Participation: Building Trust for Future Research
Children in trials today are the adult participants of tomorrow. Their caregivers are the future advocates or detractors for your brand, your trial, and your science.
Our PX model includes:
Post-Trial Transition Support: Explaining next steps in ways children and families understand
Gratitude and Advocacy Tools: Helping families feel acknowledged, not extracted
Future-Readiness Engagement: Opt-ins for recontact, education, and community building
One PXO pilot study found that over 80% of caregivers were more likely to consider future trial participation, and 74% said they’d recommend participation to other families.
Conclusion: Pediatric Trials Demand More Than Protocol Flexibility
They demand deep respect for childhood, caregiver psychology, and family realities.
As a PXO, Jumo Health provides the infrastructure to operationalize that respect, increase enrollment, improve retention, and reduce risk at every stage.
This is not optional. It’s how we stop treating pediatric patients as a recruitment problem and start seeing them as partners in science.
Contact Jumo Health to see how this PX model can transform your next pediatric trial.
Why Patients Drop Out Before They Even Join
By John Seaner
The Enrollment Abyss:
Why Patients Drop Out Before They Even Join, and How a PXO Closes the Gap
Clinical trial recruitment strategies are often built around one core assumption: if patients know about your trial, they’ll participate. So, sponsors invest heavily in awareness campaigns, eligibility pre-screeners, and digital outreach platforms all to “fill the funnel.”
But awareness alone is a false proxy for intent.
High click rates, large referral volumes, and widespread campaign visibility mean nothing if patients don’t follow through. Most patients drop out before they even reach the consent stage, a phenomenon we call the Enrollment Abyss.
Why? Because while recruitment teams focus on visibility, patients are silently navigating emotional, cognitive, and logistical minefields with little support.
Jumo Health is a Patient Experience Organization (PXO) that addresses this gap head-on. By applying behavioral science, health literacy, and human-centered design across the pre-consent experience, our Patient Experience (PX) model replaces passive interest with committed participation.
The Enrollment Abyss: A Breakdown in the Decision Journey
Let’s trace the typical patient pathway from initial outreach to full enrollment:
Awareness:
A patient hears about a study through an ad, HCP, or community channel.
Consideration:
They click, call, or ask for more information.
Screening:
A prescreener determines eligibility.
Consent:
They review trial details and decide to participate.
Enrollment:
The first visit confirms participation.
At each step, attrition compounds. For every 100 patients who express interest:
may complete a screener
may be eligible
may engage with the site
may begin consent
may enroll
This funnel is neither efficient nor ethical. Patients fall away not because they don’t qualify, but because the path to participation is confusing, overwhelming, and emotionally unsupported.
What Patients Experience That Sponsors Often Miss
Patients don’t make trial decisions in a vacuum. They do it while managing symptoms, juggling care responsibilities, worrying about work, and seeking approval or support from family members.
Let’s break down the 4 hidden forces that drive pre-enrollment dropout:
1. Cognitive Load
Most trial materials are designed for regulators, not real people. Protocol language, eligibility criteria, and visit schedules are complex, even for health-literate adults. Cognitive load causes mental fatigue, risk aversion, and decision paralysis.
2. Emotional Friction
Fear, mistrust, and anxiety are common. Patients fear side effects, placebos, or feeling like “guinea pigs.” Without empathetic framing and psychological safety, they disengage.
3. Social Uncertainty
Patients worry about how their decision will affect family, friends, or jobs. Will their employer be flexible? Will their spouse support the decision? Will their community understand?
4. Procedural Ambiguity
Even when patients want to participate, the logistics are rarely clear. Who calls next? What should they bring to a visit? How long will it take? These gaps signal disorganization and erode trust.
A PXO Transforms Enrollment Into a Designed Experience
Jumo Health reimagines enrollment not as a series of disconnected steps, but as a designed decision experience, one that anticipates, informs, and activates patients in real time.
We deploy a system of engagement that integrates 5 key elements:
1. Behavioral Journey Mapping
2. Decision Support Tools
3. Clarity-Focused Content
4. Emotional Priming and Reassurance
5. Participation Readiness Scoring
Let’s explore how each element works.
1. Behavioral Journey Mapping
The PX model begins by mapping not just the procedural flow of enrollment, but the behavioral and emotional steps that patients go through.
This includes:
Identifying decision points: e.g., whether to respond to an ad, complete a screener, tell a caregiver
Anticipating drop-off triggers: e.g., feeling overwhelmed, confused by medical language, loss of motivation
Embedding recovery moments: e.g., nudge emails, chatbot reassurance, pre-consent coaching
These maps allow us to design interventions at precise friction points, transforming passive drop-offs into re-engagement moments.
2. Decision Support Tools
The PX model equips patients with tools that don’t just explain the trial, they support the decision-making process itself.
Examples include:
Side-by-Side Comparison Sheets: Trial participation vs. standard care, highlighting visit burden, potential benefits, risks, and unknowns
Values Clarification Exercises: Helping patients understand what matters most to them (e.g., symptom relief, helping others, time commitment).
Digital Decision Companions: Interactive guides with FAQs, glossary terms, visual walk-throughs, and site contact options
Social Influence Templates: Materials to help explain the trial to partners, children, or employers, reducing uncertainty and stigma
These tools shift the dynamic from “do I qualify?” to “is this right for me?”
3. Clarity-Focused Content
The PX model rewrites the enrollment experience using plain language, visual design, and health literacy principles. But more importantly, we segment content by context, not just language.
We differentiate:
Newly diagnosed vs. experienced patients
Digitally fluent vs. digitally hesitant populations
Culturally distinct communities with different information trust models
Caregiver-inclusive households who need dual communication tracks
In one real-world example, a PXO redesigned an IBD trial’s pre-consent materials for Spanish-speaking caregivers. Result: 3x higher call-back rate, and 2.4x higher consent initiation.
4. Emotional Priming and Reassurance
Many patients click out of curiosity but then hesitate.
The PX model uses behavioral science to reduce hesitation through:
Narrative Engagement: Real patient stories, conveyed with authenticity, that reinforce agency, hope, and relatability
Framing Nudges: Messaging that presents participation as an act of control, contribution, or community service
Stress Buffering Scripts: Chat and email copy designed to reduce cortisol-triggering language and promote calm decision-making
Microcommitment Pathways: Breaking down decisions into smaller steps (e.g., “watch a short video,” “schedule a 10-min call”) to reduce drop-out
We don’t assume readiness. We build readiness.
5. Participation Readiness Scoring
The PX model tracks behavioral signals that indicate patient readiness and risk of dropout:
Click patterns (e.g., time spent on trial burden pages vs. benefit pages)
Engagement speed (e.g., how fast they complete screens, how often they re-visit)
Caregiver interactions (e.g., forwarding materials, shared decision behavior)
Survey response tone (e.g., hesitancy indicators, confusion markers)
In one trial for moderate psoriasis, participant readiness scoring identified high-risk dropouts pre-consent, enabling site coordinators to personally intervene. The result? 26% lift in screening-to-enrollment conversion.
Why Clinical Operations Must Lead This Shift
Enrollment isn’t a marketing challenge. It’s an operational blind spot.
When patients drop out before they even enroll, it’s not because they’re uninformed but because they’ve been under-supported.
A PXO provides clinical operations teams with:
Predictable conversion rates based on behavioral tracking
Higher data quality by reducing regret-driven consent
Faster time to full enrollment with fewer screen-fail surprises
Lower site friction thanks to more informed, pre-qualified participants
Metrics That Matter
The PX model tracks enrollment performance using:
- IEQS (Informed Engagement Quality Score): Assesses consent comprehension, values alignment, and emotional readiness
- Enrollment Journey Completion Rate (EJCR): Percent of patients who move from interest to full enrollment
- Participation Confidence Index (PCI): Likelihood that a patient will remain engaged post-enrollment based on early behavioral markers
- Nudge Responsiveness Score (NRS): Sensitivity to behavioral prompts that sustain decision momentum
Real Outcomes
In a Phase 3 trial for generalized anxiety disorder (GAD):
- Implementing patient experience optimization increased consent rates by 31%.
- Time to full enrollment dropped by 22 days.
- Early dropouts (within 2 visits) fell by 38%.
- Patient satisfaction with enrollment process jumped to 92%.
- Site coordinator time spent on repeat explanations dropped by 40%.
Close the Gap Before It Opens
If your enrollment strategy stops at screener completion, you’ve already lost the trial.
Patients don’t enroll because they qualify, they enroll because they feel ready, supported, and informed. That readiness doesn’t happen by accident. It happens by design.
The PX model is how you close the Enrollment Abyss with clarity, trust, and a system that respects the complexity of patient choice.
If you’re ready to replace dropouts with commitments, request your PX consultation.
Solving the Silent Dropout Problem in Specialty Disease Trials
By John Seaner
Solving the Silent Dropout Problem in Specialty Disease Trials:
Why a PXO Is the Retention Engine Trials Desperately Need
Clinical trial success hinges on more than enrollment. In specialty disease research, conditions like multiple sclerosis, ulcerative colitis, endometriosis, lupus, and chronic migraine, getting patients in the door is only the beginning. Retention is where most trials break down.
Too often, sponsors fixate on recruitment volume without building systems to sustain engagement. The result? Early enthusiasm evaporates. Visit adherence declines. Dropouts rise. And trial timelines, data quality, and budget integrity all suffer.
What’s worse is that the industry frequently treats retention failures as unavoidable: “the cost of doing research.” But that mindset is both outdated and operationally dangerous.
Jumo Health’s Patient Experience (PX) model reframes retention not as a passive metric to track, but as a system to design. Especially in specialty disease trials where patients live with complex, fluctuating conditions, the PX model delivers sustained, behaviorally intelligent engagement that improves outcomes across the board.
The Retention Problem Is Bigger Than You Think
Let’s start with data:
-
- The average dropout rate across clinical trials is 30% to 40%, with some specialty trials exceeding 50%.
- A single patient withdrawal in a specialty disease trial can cost $17,000 to $50,000, depending on protocol intensity and replacement needs.
- Mid-trial dropouts disproportionately affect minority participants, contributing to data disparities and post-market safety blind spots.
These are not just statistical problems. They are design failures. They reflect a system that recruits patients into participation but fails to retain their confidence, clarity, or motivation.
Specialty trials amplify this risk due to the very nature of the diseases being studied:
- Patients are often fatigued by years of treatments with variable success.
- They may be managing multiple comorbidities, and increasing emotional and logistical burden.
- Disease symptoms may be episodic, reducing perceived urgency mid-trial.
- Sites are frequently specialty clinics with high throughput, leaving little time for deep relationship building.
Retention is not solved by adding stipends or sending reminders. It is solved by building a system around the actual patient experience.
Specialty Disease Participation = High Decision Investment
Specialty trial participation isn’t a light decision. These are not routine outpatient visits. They’re multi-visit commitments requiring invasive assessments, therapy pauses, schedule disruptions, and significant life impact.
Patients weigh:
- Will this trial make me feel better or worse?
- How will it affect my current care plan?
- Can I afford to take time off work for extra visits?
- What will my family think about the risks?
- Do I trust this sponsor or site?
These are high decision investments. And any friction such as unclear logistics, inconsistent messaging, and inadequate support can tip the scale toward withdrawal.
This is where the PX model comes in.
Patient Experience Optimization = Retention by Design
As a Patient Experience Organization (PXO), Jumo Health recognizes that sustained trial engagement is not an accident, it’s an outcome of experience architecture.
Our PX model replaces fragmented retention tactics with a connected, cross-phase system grounded in three disciplines:
Behavioral Science:
Reducing dropout by anticipating psychological triggers, stress points, and decision fatigue.
Health Literacy:
Ensuring patients and caregivers understand not just what is happening, but why it matters.
Human-Centered Design:
Building trust, clarity, and support into every touchpoint from consent to the last visit.
Let’s break down how the PX model operates across a specialty trial lifecycle.
Before Enrollment: Setting the Right Expectations
The PX model reduces regret-based dropout by aligning expectations early before the first signature.
Tactics include:
Experience Preview Tools: Simulated day-in-the-life content so patients understand what trial participation will require (e.g., lab visits, GI preps, device use).
Side-by-Side Comparison Sheets: Clarify how participation differs from standard care, including time, outcomes, and risks.
Behavioral Opt-In Pathways: Patients can signal readiness levels, flag concerns, and get tailored responses that address their specific hesitation points.
When patients enroll with clarity and not just eligibility, retention improves dramatically.
Early-Trial Stage: Building Confidence and Connection
The first three visits in a specialty trial are critical. This is where drop-off peaks. PX Interventions here include:
Comprehension Reinforcement Nudges: Bite-sized reminders, explainers, and prompts delivered by SMS, email, or in-visit tools to reinforce understanding.
PX Visit Kits: Customized materials for patients and caregivers to understand procedures, expected timelines, and side effect management.
Trust Loop Mapping: Real-time feedback capture that identifies patients at risk of disengagement due to unmet expectations or unclear instructions.
In one Phase II endometriosis trial, Jumo Health’s PX model led to a 46% reduction in early-stage dropouts compared to a previous protocol version, driven largely by better expectation management and symptom prep tools.
Mid-Trial Stage: Maintaining Engagement in the “Quiet Middle”
By the midpoint of a specialty study, the novelty has worn off and treatment fatigue sets in. The PX model addresses this phase by:
Reactivation Campaigns: Reminders of “why this matters” tied to patient values, previous engagement signals, or comparative metrics (e.g., adherence success).
Symptom-Specific Support Tools: For diseases like IBD or MS, PX optimization provides timely digital tools to address flare-up fears and reinforce care continuity.
Behavior-Triggered Outreach: RRS (Retention Risk Score) algorithms detect warning signs such as missed visits, silence, or reduced ePROs and deploy support before withdrawal happens.
In one chronic migraine trial, dropout decreased by 31% mid-study after implementing PXO-powered risk scoring and proactive interventions.
Late-Trial Stage: Closing Strong and Building Advocacy
Retention doesn’t stop at the final visit. Patients often feel uncertain, disconnected, or abandoned, especially if the outcome is unknown. The PX approach extends support with:
Post-Trial Transition Kits: Guidance on what happens next, how to stay in touch, and access to future opportunities.
Digital Advocacy Onboarding: Options for patients to opt into community groups, share experiences, and refer others.
Gratitude-Based Reengagement: Personalized thank-you campaigns that validate contribution and reinforce their value to science.
This not only boosts final visit completion, but increases the likelihood of future trial participation, word-of-mouth referrals, and long-term sponsor reputation.
PXO Retention Outcomes in Practice
In a multicenter Phase III trial for moderate-to-severe ulcerative colitis (N=400):
- PXO implementation led to a 37% improvement in visit adherence
- Dropouts decreased by 42% compared to matched historical protocols
- Patient-reported satisfaction (measured at V3 and final visit) exceeded 90%
- Protocol deviations related to missed education were reduced by half
These improvements translated into faster database lock, lower data cleaning costs, and a higher quality, more diverse dataset for submission.
Metrics That Matter for Retention
PX retention performance is tracked with precision through:
- Patient Journey Completion Rate (PJCR): Measures how many patients complete protocol-defined journeys
- Motivational Drift Index (MDI): Tracks declines in stated patient motivation over time
- PX Comprehension Score (PXCS): Gauges how well patients retain understanding of trial procedures and value
- ePRO Completion Continuity: Identifies drop-off points in patient-reported outcome reporting, often a proxy for disengagement
These metrics don’t just flag problems, they enable live intervention.
Sites Love Our PX Model, Too
Retention efforts often fall to overburdened coordinators. PX removes this pressure by offering:
- Site-specific retention dashboards
- Localized versions of toolkits tailored to protocol and cultural context
- Live troubleshooting support for coordinators and site managers
In feedback surveys, 88% of sites using PX support reported that patient communication burdens were “significantly reduced.”
Why Specialty Trials Can’t Afford to Ignore PX
Sponsors lose millions to avoidable attrition.
PX is not a luxury, it’s a lever to protect everything else:
Enrollment investments
Investigator relationships
Trial timelines
Data quality
Regulatory credibility
More importantly, it reflects the reality that patients don’t just enroll. They stay or leave based on how they are treated and supported throughout.
Retention Is a System, not a Metric
Specialty trials operate in a reality of high-stakes decisions, heavy burden, and emotionally complex participation.
If your trial doesn’t reflect that reality, your patients will walk.
PX optimization is how you build a trial that respects the full patient experience and gets patients to the finish line. With better data. Greater equity. Lower cost. And long-term trust. If your next specialty trial can’t afford another dropout cycle, contact Jumo Health today.
Why Clinical Trials Are Failing Patients
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.
Jumo Health Appoints Brittany Erana Chief Executive Officer to Lead Next Phase of Growth
NEW HAVEN, CT., June 2, 2025 -- Jumo Health, a global leader in optimizing the patient experience for clinical trials, today announced the appointment of Brittany Erana as Chief Executive Officer. With more than 20 years of experience in digitally enabled research and patient-centered innovation, Erana will lead the company’s next stage of strategic growth focused on increasing patient activation and reducing trial dropout rates.
Prior to joining Jumo Health, Erana served as General Manager of patient first digital solutions at PPD, one of the world’s leading contract research organizations. There, she oversaw digital transformation strategies that modernized clinical research operations, enhanced patient experience, and improved data collection.
"Building the future of healthcare with the patient at the center has been the throughline of my career,” said Erana. “I’m thrilled to be joining Jumo Health at this pivotal moment to help transform how people are engaged in clinical research, from first touch to final visit and improving how our clients bring new therapies to market for those who need them most.”
Erana will be responsible for guiding Jumo Health through a dynamic phase of growth and transformation, in partnership with Falfurrias Management Partners, who acquired Jumo Health in August 2024. Her focus will be on expanding Jumo Health’s capabilities through organic and acquisitive growth opportunities, enabling the company to address key friction points in trial awareness, accessibility, and adherence, especially for underrepresented patient populations.
“As trial dropout rates rise, protocol complexity increases, and timelines lengthen, sponsors need more than study awareness campaigns, they need personalized, scalable patient experience solutions,” said Adam Cossman, Jumo Health’s Executive Chairman and an executive advisor on the Falfurrias team. “Brittany’s leadership will be pivotal in meeting this need and building upon Jumo Health’s legacy in clinical innovation.”
About Jumo Health
Jumo Health (www.jumohealth.com) is a global leader in patient experience optimization, leveraging behavioral science, health literacy, and creative storytelling to drive informed participation in clinical trials. We enable patients to uncover the information they need, in the formats they desire, accessed via the channels they prefer, to become active clinical trial participants. Spanning 24 therapeutic areas and 180 conditions in 90 languages, our human-centered educational solutions are the choice of 17 of the world’s top 25 life sciences companies to help them reduce stigma, eliminate fear, and build trust with target patient populations, including those which are historically underrepresented. By creating accessible, relevant, and impactful communications, we empower patients to take charge of their health, remove barriers to clinical trial participation, and ultimately contribute to better outcomes.
About Falfurrias
Falfurrias Capital Partners is an operationally focused middle-market private equity fund focused on investing in growth companies. The team is comprised of investors and proven operators, as well as in-house resources across strategy & market insights, risk & integration, talent, and technology. The fund is managed by Falfurrias Management Partners, a Charlotte-based private equity firm founded in 2006 by Hugh McColl Jr., former chairman and CEO of Bank of America; Marc Oken, former CFO of Bank of America; and Managing Partner Ed McMahan. The firm has raised $3.6 billion across seven funds and invests in growing, middle-market businesses in sectors where the firm's operational resources, relationships, and sector expertise can be employed to complement portfolio company executive teams in support of growth objectives. For more information, visit www.falfurrias.com.