Health Literacy Is the Hidden Enrollment Barrier: How a PXO Closes the Comprehension Gap
By John Seaner
Health Literacy Is the Hidden Enrollment Barrier:
How a PXO Closes the Comprehension Gap
Every clinical trial requires informed consent. Every regulatory body mandates that patients understand what they’re signing up for. Every sponsor claims that education materials are “clear and easy to follow.”
But here’s the operational reality:
- Up to 40% of trial participants don’t fully understand the purpose of the study they’re enrolled in.
- One in three adults in the US has low health literacy and that number climbs in high-need, underserved, or non-English-speaking populations.
- Trials often use materials written at a 10th–12th grade reading level, while best practice is to use 6th grade or below.
- Low comprehension leads to higher screen failure, early withdrawal, and reduced data quality.
This isn’t a side issue. It’s a foundational weakness in how clinical trials communicate, enroll, and retain patients.
Health literacy isn’t just about words. It’s about meaning, context, and confidence.
And that’s exactly where a Patient Experience Organization (PXO) like Jumo Health creates strategic advantage.
The Myth of “Plain Language” Consent
Most trial consent materials claim to use “plain language.” But when we test these materials with real patients across language, age, race, and education level, three things become clear:
Language alone isn’t enough:
Patients also need visuals, analogies, repetition, and real-world relevance.
Comprehension is contextual:
What makes sense on paper doesn’t always resonate emotionally or cognitively during a vulnerable decision.
One-size-fits-all fails:
A first-time participant deciding on a Phase I trial isn’t the same as a parent weighing a pediatric study for a rare condition.
A PXO treats health literacy as a behavioral science problem, not just a copywriting task.
The PXO Approach to Health Literacy: 4 Dimensions of Design
At Jumo Health, our Patient Experience (PX) model incorporates a layered approach to health literacy, addressing not just what is said, but how, when, and why it’s communicated.
Our 4 pillars:
1. Cognitive Load Reduction
2. Emotional Framing
3. Contextual Anchoring
4. Iterative Comprehension Measurement
Let’s explore each one.
1. Cognitive Load Reduction: Say Less, Mean More
When patients are overwhelmed, scared, or unfamiliar with medical language, even “simple” sentences can be hard to process.
A PXO reduces cognitive burden with:
Information chunking: Breaking complex concepts into digestible sequences
Visual storytelling: Using illustrations, animations, or timelines to explain process and risk
Progressive disclosure: Revealing detail in layers, so patients aren’t bombarded upfront
Behavioral default design: Highlighting the key decisions clearly (eg, participation, withdrawal, follow-up), not burying them in pages of regulatory language
In one inflammatory disease trial, this approach raised comprehension from 62% to 89% in low-literacy participants.
2. Emotional Framing: Trust Starts Before Understanding
Even the most understandable content fails if it triggers fear, confusion, or distrust.
A PXO reframes trial participation emotionally:
Leads with “why,” not “what”: Anchoring the trial in patient-centered benefits (eg, “help others,” “contribute to science,” “better options”)
Acknowledges risk honestly: Trust is built when risks are described clearly, not minimized
Integrates stories from prior participants: Lived experiences increase resonance and reduce anxiety
Uses patient-preferred language: No one wants to be called a “subject.” Patients want to be seen as people.
This framing increases both recruitment intent and consent quality, especially in populations historically excluded from research.
3. Contextual Anchoring: Help Patients See Themselves in the Process
Understanding isn’t abstract, it’s personal.
A PXO uses tools that help patients see how the trial fits into their lived reality, including:
Visit walkthroughs: What will happen, where, with whom, and for how long
Decision maps: Helping patients identify what matters most to them: time, side effects, location, contribution
Daily life integration planners: Showing how the trial will impact work, school, family, or routine care
Caregiver overlay materials: Enabling shared understanding across family systems
This turns consent into a two-way conversation, not a document drop.
4. Iterative Comprehension Measurement: What Gets Measured Gets Improved
A PXO doesn’t assume comprehension. We measure it, continuously.
Our tools include:
Comprehension check-ins: Integrated into eConsent flows using short, emotionally neutral assessments
Informed Engagement Quality Score (IEQS): A metric that tracks how well patients grasp trial goals, procedures, and rights
Consent dropout heatmaps: Analyzing where patients disengage during the decision process
Mid-trial reinforcement modules: Revisiting key concepts at critical points, such as first dosing or protocol changes
One oncology sponsor using PXO methods saw a 36% reduction in early screen failure due to poor understanding.
Real-World Example: Health Literacy in a Rare Disease Trial
A global rare disease study for a metabolic condition faced high screen failure due to participants not fully understanding eligibility requirements.
A PXO implemented:
- A comic-book style consent tool co-created with advocacy partners
- Pre-consent coaching modules for caregivers, delivered via video
- Progressive disclosure materials explaining the difference between research and treatment
- Real-time IEQS dashboards for sites, flagging at-risk participants
Result: Comprehension scores rose by 42%, and early withdrawal dropped by 29% in the first 12 weeks.
Special Considerations by Trial Type
A PXO tailors health literacy solutions by trial category:
- Common diseases: Combat message fatigue, normalize participation as part of standard care
- Specialty diseases: Emphasize benefit framing and clarity around eligibility complexity
- Rare diseases: Prioritize shared decision-making, caregiver education, and advocacy partnerships
- Pediatric trials: Use age-appropriate tools, narrative visualizations, and separate caregiver/child materials
In every case, a PXO ensures comprehension is earned, not assumed.
Operational Benefits: Why Health Literacy Is a Business Driver
Improving comprehension does more than help patients, it drives trial success:
Higher enrollment rates from underserved, skeptical, or marginalized populations
Reduced screen failure, especially where eligibility is strict
Better retention, because patients know what to expect
Improved site efficiency, with fewer repeated questions and less emotional labor
Lower regulatory risk, with cleaner consent audits and participant-reported clarity
Put simply: Health literacy reduces trial risk at every level.
PXO Metrics for Health Literacy Impact
Our outcomes include:
- PXCI (Patient Experience Composite Index): Combines comprehension, confidence, and emotional readiness
- IEQS (Informed Engagement Quality Score): Tracks pre-enrollment understanding and post-enrollment reinforcement
- Enrollment Friction Index (EFI): Measures where comprehension barriers stall progress
- Retention Risk Score (RRS): Includes understanding as a predictive dropout factor
These are not vanity metrics. They guide operational decisions, site training, and resource allocation in real-time.
Conclusion: If Patients Don’t Understand, They Don’t Stay
We cannot ask patients to make life-altering decisions based on 15-page PDFs written at a 12th-grade reading level with no visuals and no emotional support.
That’s not informed consent. That’s informed confusion.
With a PXO you can redefine the trial experience with clarity, empathy, and context, not just better brochures.
In a world where health equity is a mandate, not a buzzword, health literacy is the single most important lever for inclusion, compliance, and retention.
Want to know how this PX model can improve comprehension across your pipeline? Let’s start the conversation.
Retention Isn’t a Reminder Problem: How PXOs Reduce Dropout by Reengineering the Mid-Trial Experience
By John Seaner
Retention Isn’t a Reminder Problem:
How PXOs Reduce Dropout by Reengineering the Mid-Trial Experience
Clinical trial retention isn’t just a matter of convenience, it’s a matter of cost, validity, and survival.
Consider the operational impact:
- Every early dropout devalues your enrollment investment.
- Every missing data point risks protocol deviation.
- Every lost participant increases regulatory scrutiny.
- And every non-completer introduces bias, threatening trial integrity.
Yet dropout is widespread:
- 15–40% attrition rates are common, especially in longer or complex studies.
- Dropout often occurs within the first 2–4 visits, well before endpoints are reached.
- Retention plans, if they exist at all, are usually passive: email nudges, site calls, occasional thank-yous.
What’s missing isn’t awareness or logistics. What’s missing is an intelligent, experience-first system, one that keeps patients emotionally engaged, cognitively supported, and operationally confident throughout the trial journey.
That’s what Jumo Health’s PX model delivers.
The Real Drivers of Dropout
Before we discuss how the PX model prevents attrition, let’s be clear about what causes it.
Patients rarely leave trials for a single reason. Retention failure is usually the result of accumulated friction; tiny stressors and misalignments that stack up until the trial no longer feels worth the burden.
Common drivers include:
Emotional Decay:
Initial motivation fades, replaced by doubt, anxiety, or frustration
Cognitive Overwhelm:
Patients lose track of visit purpose, procedures, or safety expectations
Life Logistics:
Changes in work, childcare, caregiving duties, or health status
Communication Gaps:
Lack of proactive updates, hard-to-reach sites, unclear expectations
Shifting Priorities:
Especially in long trials, other health needs or life events take precedence
Feeling Forgotten:
When patients feel like data points, not people
These aren’t problems solved by text reminders.
They’re experience-design failures and as a Patient Experience Organization (PXO), Jumo Health solves them at the source.
PXO as a Retention Engine
The PX model doesn’t treat retention as an afterthought. It’s baked into the trial experience from day one.
We deliver a system that:
-
- Prevents dropout before it starts by designing for emotional resilience
- Tracks dropout risk dynamically using real-time behavioral signals
- Equips sites with predictive tools and actionable content
- Centers the human experience, not just compliance metrics
These scores allow for proactive intervention and transparent ROI tracking.
Let’s break down the PX retention model across 4 strategic components:
1. Behavioral Continuity Mapping
2. Emotional Durability Design
3. Touchpoint Intelligence
4. Adaptive Engagement Frameworks
1. Behavioral Continuity Mapping
The first step is understanding how patient motivations and behaviors evolve after enrollment.
The PX retention model maps:
Motivational arcs: When does altruism peak? When does fatigue set in?
Dropout “danger zones”: Visit 2 (side effects), Visit 4 (routine fatigue), Visit 6 (external life conflict)
Friction flashpoints: Protocol confusion, repeated procedures, lack of trial updates
Segment-specific triggers: For example, older patients may disengage if transport support ends; caregivers may burn out mid-trial
Using this map, patient experience optimization introduces retention interventions timed to emotional, not just procedural, milestones.
Example: For a metabolic disorder trial, a PXO’s timeline-based friction forecast predicted a retention cliff at Month 3. Custom content and a care manager call at Week 10 improved completion by 32%.
2. Emotional Durability Design
Retention starts with how patients feel.
The PX retention model builds emotional durability using:
Progress Framing: Messaging that reinforces how far a patient has come, not just what’s next
Outcome Anticipation Tools: Reinforcing what patients are contributing to, even if they don’t directly benefit
Milestone Recognition: Not cheap gifts, but meaningful acknowledgments (e.g., letters from trial leadership, personalized progress infographics)
Social Identity Anchoring: Helping patients see themselves as contributors, not subjects
This layer keeps motivation alive even when the novelty wears off.
3. Touchpoint Intelligence
The PX retention model transforms every patient interaction into a moment of reinforcement not repetition.
This includes:
Micro-feedback loops: At each visit, patients rate how informed, confident, and supported they feel
Visit Companion Materials: Each visit gets its own explanation sheet with “why this matters” context
Dynamic FAQs: Updated based on site feedback and patient queries
Risk Signal Monitoring: Flagging patients who cancel last-minute, ask more negative-toned questions, or express hesitancy
When retention signals degrade, the PX system triggers a proactive recovery plan: customized messaging, coordinator outreach, or a digital nudge.
In a pediatric endocrinology trial, this system cut mid-study withdrawal in half at 5 high-risk sites.
4. Adaptive Engagement Frameworks
No two trials and no two patients retain the same way. The PX retention model creates modular frameworks tailored by:
Therapeutic area: Oncology fatigue is different from dermatology discouragement
Trial phase: Phase I patients require higher reassurance; Phase III patients need sustained connection
Cultural norms: Retention cues differ across regions (e.g., community-based reinforcement in APAC vs. personalized status in EMEA)
Age and activation level: Low-activation patients benefit from concierge-like support; high-activation patients want autonomy and information depth
This adaptive model ensures retention isn’t just reactive. It’s strategic, segmented, and scalable.
Operational Value of Retention-Centered Design
Clinical operations executives often ask: what’s the measurable value?
Here’s what a PXO-driven retention approach delivers:
Cost-per-completer drops by 20–35%
Fewer rescue studies and protocol amendments
Improved data completeness and endpoint powering
Higher site satisfaction and less coordinator burnout
Stronger submission packages with lower dropout bias
Higher patient satisfaction scores, fueling advocacy and reactivation
In short: better science, better economics, better experience.
PXO Retention Metrics
We measure what matters. The PX model includes:
- Retention Resilience Index (RRI): Predicts likelihood of completion based on early trial signals
- Dropout Risk Velocity (DRV): Tracks how fast disengagement risk accelerates in different cohorts
- Visit Confidence Score (VCS): Real-time feedback on whether patients understand and value upcoming visits
- Trial Satisfaction Score (TSS): Comprehensive patient-reported outcome on trial experience, segmented by phase and visit
These metrics allow clinical operations teams to intervene early and optimize continuously.
Retention in Context: Common, Rare, Specialty, and Pediatric Trials
A PXO customizes retention by disease type:
- Common diseases: Measures emotional, informational, and logistical readiness pre-consent
- Specialty diseases: Emphasize side effect management, real-world benefit alignment
- Rare diseases: Prioritize caregiver support, decentralized access, and long-term trust
- Pediatric trials: Integrate child-friendly framing, family engagement, and school/work conflict mitigation
In all cases, a PXO sees retention not as a metric but as a relationship.
Conclusion: Retention is an Experience, Not a Reminder
Retention doesn’t start when a patient misses a visit. It starts the moment they say yes.
A PXO ensures that “yes” turns into a sustained journey, one where patients feel valued, informed, and supported every step of the way.
If you’re still losing patients mid-stream, it’s not your protocol. It’s your system.
Let’s redesign retention before dropout becomes your next operational crisis.
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.
Partnering with Clinical Trials for All to Educate, Engage, Empower Patients
At Jumo Health, our mission is to educate, engage, and empower – with the goal of driving diversity in clinical trials. This shared vision made partnering with Clinical Trials for All a natural fit. Together, we’re breaking down barriers to clinical trial participation and ensuring that patients have access to the knowledge and tools they need to make informed decisions about their healthcare.
Every year, countless clinical trials go under-enrolled, delaying the development of potentially life-saving treatments. Despite the importance of these trials, awareness and participation remain low, and even fewer individuals from underserved communities get involved. In fact, according to the FDA, White participants made up 75%, Hispanic participants made up 11%, Black participants made up 8% and Asian participants made up 6% of all trial volunteers. This disparity makes it impossible for researchers to fully understand whether or not a new treatment is effective and safe for all people.
The only way to close this gap is by educating patients from all backgrounds about how to participate in clinical trials. We are excited to do just that through this partnership with Clinical Trials for All. With our shared mission, we’re working together to make clinical trials more approachable, addressing misconceptions, and building trust within local communities.
Our Shared Mission: Educate, Engage, Empower
- Educate: We’re working together to create resources that simplify clinical trials, explaining their purpose, process, and potential benefits in ways that are easy-to-understand.
- Engage: By sharing authentic patient stories and addressing common concerns, we’re sparking meaningful conversations that inspire confidence and encourage participation.
- Empower: Through community-driven efforts, we’re empowering individuals to take charge of their health by engaging with them directly in their communities, which fosters meaningful engagement and builds trust.
Join the Cause
We’re proud to stand alongside Clinical Trials for All, but we can’t do it alone. Together, we can help more people understand and access clinical trials. Visit their website to learn more and join the cause: Clinical Trials for All.
By working together, we can create a future where everyone has equal access to cutting-edge healthcare solutions. Let’s make it happen—together.
World AIDS Day: Again and Still
By Dr. Dontá Morrison
Every year, on December 1st, the world observes World AIDS Day, a global event dedicated to
promoting HIV awareness, encouraging testing, celebrating those living with the virus, and
honoring the millions who have succumbed to HIV over the last four decades. While HIV gained
mainstream attention in 1981, medical researchers suggest its origins in humans date back much
earlier—likely between 1915 and 1941. This revelation may prompt many to pause and verify
through a quick Google search, but regardless of whether HIV surfaced in the early 20th century
or became widely recognized in the 1980s, one unshakable truth remains: HIV has existed far too
long for misconceptions and stigma to persist.
Despite years of awareness campaigns and scientific advancements, it is alarming that some still
question how the virus is transmitted or perpetuate harmful stereotypes by labeling it as a “gay
disease.” Such myths fuel stigma, hinder prevention efforts, and alienate those most vulnerable
to the virus. World AIDS Day serves as a vital opportunity to educate, reflect, and recommit to
eradicating HIV and the prejudices associated with it. By fostering understanding and
compassion, we honor the memories of those lost and empower those living with HIV to thrive.
We must ensure the lessons of the past propel us toward a more informed and inclusive future.
Having worked in HIV awareness, education, and prevention for over 20 years, I have witnessed
significant progress in these areas. Individuals living with HIV no longer face the burden of
multi-pill regimens or constant medical visits. Instead, simplified treatments allow them to live
healthier lives with fewer disruptions. Biomedical prevention strategies like pre-exposure
prophylaxis (PrEP) and post-exposure prophylaxis (PEP) have also revolutionized the fight
against HIV. These tools significantly reduce the risk of infection when used correctly, providing
a powerful means to prevent the spread of the virus.
However, as much as I want to celebrate these advancements, I cannot confidently say we have
moved the needle far enough. Stigma remains one of the most significant barriers in our efforts.
Shame and misinformation continue to marginalize those living with HIV and those at risk of
infection. Many people hesitate to seek testing or treatment due to fear of judgment, rejection, or
discrimination. This hesitation perpetuates cycles of ignorance and vulnerability, allowing the
virus to spread unchecked.
HIV is not confined to one demographic, behavior, or lifestyle. It affects people of all races,
genders, sexual orientations, and socioeconomic backgrounds. Yet, the belief that it is “someone
else’s problem” continues to impede our ability to combat it effectively. The delusion about
modes of HIV transmission leads many to avoid testing and prevention strategies, assuming they
are somehow exempt. Those who perceive themselves as low-risk may unknowingly engage in
high-risk behaviors, such as unprotected sex with partners whose status they are unaware of.
These assumptions create a dangerous ripple effect, perpetuating undiagnosed cases and
transmission.
To dismantle these barriers, we need a cultural shift grounded in education and compassion.
Comprehensive, stigma-free sex education is essential to teaching people about HIV prevention,
testing, and treatment. Biomedical tools like PrEP and PEP must be more widely discussed and
made accessible to everyone who needs them. Normalizing regular HIV testing as part of routine
healthcare—regardless of perceived risk—can help detect cases earlier, reduce transmission, and
eliminate stigma surrounding the testing process.
Equally important is addressing the systemic inequities that make HIV a disproportionate burden
for marginalized communities. Communities of color, particularly Black and Latino populations,
bear the highest rates of infection in the United States. Factors such as poverty, limited
healthcare access, and cultural stigma exacerbate these disparities. Addressing these challenges
requires funding for community-based organizations that provide culturally sensitive education
and outreach. Additionally, mental health support and accessible healthcare must be prioritized
to empower affected individuals to live full and healthy lives.
Ultimately, the fight against HIV demands a holistic approach that combines medical innovation,
widespread education, spiritual support, and an unwavering commitment to eradicating stigma.
Progress will not come from biomedical advancements alone but through community-driven
efforts to create environments where everyone feels safe to seek help, get tested, and receive
treatment. Only then can we hope to break down the walls of ignorance and fear that hinder our
progress. I look forward to the day when HIV is no longer a global crisis but a story of triumph
and resilience.
On a personal level, I am waiting for HIV awareness and prevention to receives the full
investment and urgency it deserves. Despite decades of progress, many people still fail to see
HIV as a pressing issue, often because they believe they are exempt from contracting it. This
false sense of security breeds complacency, where individuals categorize themselves as
“safe”and view HIV as the result of sinful behavior. Such misguided assumptions perpetuate
stigma, hinder testing efforts, and make prevention more challenging.
This fight is deeply personal to me, as someone who has been living with HIV for 25 years. I
often wonder if I would be as passionate about the cause if I were HIV-negative. Would I care as
deeply about World AIDS Day, AIDS walks, or National Black HIV/AIDS Awareness Day if I
didn’t face this reality daily? These are questions I can’t answer definitively. However, this is my
truth, and I cannot turn back the hands of time. Instead, I choose to focus on what I can do:
adhere to my treatment, advocate for my community, and work tirelessly to lower infection rates.
I refuse to let stigma define me or my work. Living with HIV has given me a unique perspective
and a relentless drive to fight for those who often feel unseen or unheard. Every conversation,
workshop, or campaign I participate in aims to amplify the voices of those affected and dispel
the myths that fuel this epidemic. It is not an easy journey, but it is a necessary one.
To anyone reading this, I urge you to join me in this fight. Whether by educating yourself,
encouraging others to get tested, or advocating for equitable access to healthcare, every action
counts. Together, we can work toward a future where HIV no longer carries shame, fear, or
discrimination—just hope, resilience, and the promise of a healthier tomorrow.
Advancing Health Equity: Community-First Approach to Drive Diversity in Clinical Research
October 25, 2024 | In clinical research, one ongoing challenge continues to persist: a lack of diverse representation. While the root cause stems from a combination of limited access and endemic mistrust of the health care system among certain communities, the outcome is that large pockets of communities are often excluded from studies, even in key areas where they are disproportionately affected by diseases such as diabetes, heart disease, and certain forms of cancer.
However, new strategies are emerging to address this imbalance. Community-based approaches in clinical trials are paramount to bridging this gap and paving the way for more inclusive and effective healthcare solutions.
Understanding the Problem
The underrepresentation of diverse populations in clinical research is not just a matter of statistics. It means that certain communities may not fully benefit from medical advancements. For example, while African Americans represent about 13% of the U.S. population, they make up less than 8% of clinical trial participants. The consequences are clear: treatments may not be as effective for the populations not adequately represented in the research studies.
True health equity can only be realized in healthcare when relationships within the communities in question are established and nourished on an ongoing basis; just showing up once when an investigator need them to join a trial is a recipe for continued failure. Many communities, such as Black/African American, Hispanic/Latino, LBTQ++, American Indian/Alaska Native (AIAN), and Asian American and Pacific Islander (AAPI), face barriers to healthcare access and participation in clinical trials.
There are many reasons why underserved communities do not participate in clinical trials, but mistrust of pharmaceutical companies and healthcare providers, driven by historical injustices such as the treatment of Henrietta Lacks and the participants in the Tuskegee Syphilis Study, plays a significant role.
To address this issue, many research institutions are engaging local organizations and stakeholders to institute a community-based approach to improve awareness, education, trust, and ultimately participation in clinical studies.
The Role of Policy Makers
On June 26, 2024, the FDA provided guidance urging pharmaceutical companies and researchers to prioritize diversity with programs like the Diversity Action Plan (DAP). This approach helps to enrich the data collected, ensuring a more comprehensive understanding of how the treatment affects various patient populations. Increasing diversity in these studies helps gain deeper insights into the disease or therapy being examined to ensure that results are more broadly applicable.
Barriers to Diverse Participation in Clinical Studies
There are significant barriers that pharma companies must overcome when recruiting participants from underrepresented communities including cultural mistrust, potential language differences, and facilitating shared dialogue between healthcare providers and patients.
In addition, many minority populations face financial constraints, lack of reliable transportation and limited access to healthcare facilities. It can be difficult to attend appointments during work hours or find childcare during their appointment time. While solutions such as transportation services, patient payment solutions, and at-home nursing options can help mitigate these challenges, accessibility for these communities must be considered when the protocol is developed.
The Importance of a Community-Based Approach
To overcome these barriers, targeted solutions are needed to engage communities with healthcare education well before recruitment, address historical mistrust in medical research, and partner with culturally competent organizations. Tailoring interventions to community needs and working with trusted organizations can improve health literacy and reduce health disparities. It is also imperative to provide authentic, culturally relevant educational content, tools, and resources that speak to each unique community to bridge this gap.
When done right, these efforts can improve recruitment and increase retention rates, ensuring the representation of diverse populations.
Strategies for Implementing Community-Based Approaches
Effective strategies include:
- Partnering with credible local organizations who have roots in the community
- Utilizing community-based participatory research approaches
- Hosting informational sessions and micro-workshops in trusted community spaces like churches, community centers, hair salons
- Providing digital, video and print educational materials that are culturally relevant, easy to understand and actionable
Medical terminology is often overly complicated, and impossible to understand. A critical aspect of a successful community-based strategy is working with a specialized medical communication organization to create customized print, digital, and video content that is relevant, easy to understand, and practical.
Importance of Selecting Community-Based Trial Sites
Even when patients in an underrepresented community are properly educated on clinical trials and interested, it is often difficult for them to participate if there is not a trial site nearby. Establishing trial sites within the community and providing weekend or after-hours appointments can make participation significantly easier for these patients.
Diversity training for healthcare providers and site coordinators and inclusive educational resources can empower site staff to engage with patients from underserved communities. Employing principal investigators who reflect the community demographics is another way to help patients feel more comfortable in a clinical setting.
The Path Forward
If we are to create a healthcare system that truly serves everyone, clinical trials must reflect the diversity of the population. Community-based models are proving to be a powerful tool in achieving this goal, ensuring that medical advancements are informed by those who need them most. By investing in local engagement, addressing common barriers, and building trust, the medical community can take meaningful steps toward a future where access to clinical trials truly is equitable. The hope is that more communities will benefit from medical research, improving health outcomes, and narrowing the gaps in healthcare access and quality.