Patient recruitment remains one of the biggest challenges in clinical research, with nearly 80% of trials failing to meet enrollment timelines. To address this challenge, forward-thinking clinical teams are turning to patient journey mapping – a powerful tool borrowed from user experience (UX) design that can dramatically improve patient recruitment and retention rates.

A patient journey map visualizes the complete experience of a study participant from first awareness of your clinical trial through screening, enrollment, participation, and completion. By understanding this journey from the patient’s perspective, you can identify and eliminate friction points, enhance communication, and create a more patient-centric trial experience.

This step-by-step guide will walk you through the process of creating an effective patient journey map for your clinical trial.


Why Create a Patient Journey Map?

Before diving into the how-to, let’s examine why patient journey mapping is so valuable:

  • Identify barriers to participation: Discover where potential participants are dropping out of your recruitment funnel
  • Improve patient experience: Create more empathetic, supportive interactions throughout the clinical trial
  • Increase retention rates: Address patient pain points that might lead to study discontinuation
  • Enhance recruitment efficiency: Focus resources on the most effective touchpoints
  • Align your team: Create a shared understanding of the patient experience across stakeholders


Step 1: Assemble Your Journey Mapping Team

Creating an effective patient journey map requires diverse perspectives. Aim to include:

  • Clinical research coordinators
  • Principal investigators
  • Patient recruitment specialists
  • Data managers
  • Former trial participants (if possible)
  • Patient advocates

Schedule a dedicated workshop or series of meetings specifically for journey mapping, ensuring all team members understand the purpose and expected outcomes.


Step 2: Define Your Patient Personas

Before mapping the journey, you need to understand who is taking that journey. Create 2–3 patient personas representing your target demographic groups. Include:

  • Demographic information: Age, gender, location, education level
  • Clinical characteristics: Disease severity, comorbidities, treatment history
  • Psychosocial factors: Work status, family support, technology comfort level
  • Motivations: Why they might participate in research
  • Barriers: What might prevent them from participating
  • Information preferences: How they prefer to receive health information

For example, a persona for an Alzheimer’s disease trial might include “Maria, 72, primary caregiver is her daughter, moderate disease progression, motivated by hope for new treatments, barrier is transportation to site, prefers phone communication over digital.”


Step 3: Outline the Key Stages of the Patient Journey

While each clinical trial is unique, most patient journeys include these fundamental stages:

  1. Awareness: Learning that your clinical trial exists
  2. Consideration: Evaluating whether to participate in the study
  3. Pre-screening: Initial eligibility assessment
  4. Screening: Formal eligibility determination
  5. Enrollment: Consenting and beginning study participation
  6. Active participation: Ongoing study visits and procedures
  7. Study completion: Final assessments and transition
  8. Post-trial follow-up: Continued engagement after participation

Create a horizontal timeline with these stages as the foundation of your journey map.


Step 4: Map the Patient’s Experience Across Touch Points

For each stage, identify all touch points where the patient interacts with your study. These might include:

  • Viewing patient recruitment advertisements
  • Visiting your study website
  • Calling your patient hotline
  • Speaking with their physician
  • Completing screening questionnaires
  • Visiting a study site location
  • Undergoing study procedures
  • Receiving study materials or instructions
  • Using electronic diaries or devices
  • Communicating with study staff between visits

Under each touchpoint, document:

  • Patient actions: What the patient needs to do
  • Staff responsibilities: What your team needs to do
  • Materials / tools involved: What resources are used
  • Time requirements: How long this step takes for the patient
  • Potential pain points: Where frustration or dropout might occur


Step 5: Add the Emotional Layer

The most valuable aspect of journey mapping is understanding the emotional experience of participants. For each touchpoint, consider:

  • What is the patient feeling?
  • What questions might they have?
  • What support do they need?

Represent these emotions visually using:

  • Color coding (green for positive, red for negative)
  • Emotion icons or a simple line graph indicating emotional highs and lows
  • Direct quotes from past participants or patient advisors


Step 6: Identify Opportunities for Improvement

Now comes the actionable part. Based on your completed map:

  1. Circle pain points where study participants experience negative emotions or might drop out
  2. Brainstorm solutions for each pain point
  3. Prioritize improvements based on potential impact and feasibility
  4. Assign ownership of specific improvements to study team members

Common improvement opportunities include:

  • Simplifying consent forms
  • Creating better educational materials
  • Reducing wait times
  • Improving appointment scheduling
  • Enhancing communication between visits
  • Adding transportation support
  • Modifying visit procedures for comfort


Step 7: Implement Digital Solutions Where Appropriate

Today’s clinical trials increasingly incorporate digital tools to enhance the patient journey:

  • Patient portals for secure communication and document access
  • Mobile apps for appointment reminders and symptom tracking
  • Virtual visits to reduce travel burden
  • Electronic consent platforms with better comprehension assessment
  • Interactive educational modules to improve protocol understanding
  • Wearable devices to collect data remotely

Evaluate where these tools might address pain points in your patient journey.


Step 8: Create Actionable Journey Metrics

Develop metrics to track improvements in your patient journey:

  • Conversion rates between journey stages (e.g., pre-screening to screening)
  • Time-to-enrollment from first contact
  • Dropout rates at each stage
  • Protocol deviation rates related to participant understanding
  • Retention rates to study completion

Establish a baseline before implementing changes, then measure improvements.


Step 9: Test and Refine Your Patient Journey

Your first journey map is a hypothesis to be tested. As you implement changes:

  1. Collect feedback from actual study participants through surveys or interviews
  2. Monitor your journey metrics for improvement
  3. Update your journey map based on real-world findings
  4. Share improvements with stakeholders and your broader organization

Consider your patient journey map a living document that evolves as you learn more about participant experiences.


Step 10: Extend Your Journey Map to Future Studies

The insights gained from patient journey mapping can inform future trial designs:

  • Incorporate patient journey considerations into protocol development
  • Share journey insights with sponsors during feasibility discussions
  • Build journey mapping into standard operating procedures
  • Create a library of journey maps across different therapeutic areas


Conclusion

Creating a patient journey map requires investment of time and resources, but the returns are substantial: more efficient recruitment, improved retention, and ultimately higher quality data. Most importantly, it demonstrates a genuine commitment to patient-centricity, moving beyond buzzwords to actionable improvements in the clinical trial experience.

By understanding the complete patient experience—from emotions and questions to practical barriers and support needs – research teams can design trials that not only meet scientific objectives but also respect the very real human experience of research participation.

Remember that the most effective journey maps are created collaboratively, updated regularly, and used to drive meaningful change. When done well, patient journey mapping doesn’t just improve your current trial – it transforms how your organization approaches clinical research.