Clinical Trial Patient Feedback

Clinical Trial Patient Feedback
Patient Perspectives on Participation, Burden, and Support Needs
This report synthesizes patient feedback from HNSCC patients and caregivers to help clinical trial teams improve study design, support systems, and overall patient experience. By understanding participant perspectives, we can create more patient-centered trials that enhance recruitment, retention, and meaningful outcomes.

About Savvy Cooperative
Savvy Cooperative helps companies create more patient-centered products and solutions by connecting them with diverse patient insights. Whether assessing unmet needs in new therapeutic areas, or user-testing a digital tool, savy helps conduct patient experience research and translate patient input into compelling empathetic stories and actionable takeaways.
Savvy offers unparalleled recruitment, project management, and research services. Our project management capabilities encompass screening, consenting, scheduling, communications, support, and payments. Leveraging our mixed-methods research expertise, we conduct surveys, focus groups, interviews, discussion boards, and workshops to provide in-depth insights.
You've come to the right place if you want to #AskPatients!
Founded and Led by Patients
Founded in 2016 by patient advocates Jen Horonjeff and Ronnie Sharpe, Savvy Cooperative emerged from their personal struggles with chronic illness. Frustrated by the lack of patient engagement in healthcare, they committed to bridging the gap between diverse patient experiences and industry stakeholders, ensuring patient voices drive innovation.
Jen Horonjeff, PhD | CEO
Juvenile idiopathic arthritis & autoimmune disease patient
Brain tumor survivor
Human factors engineer and user-centered designer
Former Columbia University mixed-method patient-centered outcomes researcher
Former FDA advisor
Ronnie Sharpe | COO
Cystic fibrosis patient
Founder of cysticlife.org, a rare disease social network
Community organizer
Market research consultant
PCORI awardee and reviewer
Former pharmaceutical industry advisor
Contents
Executive Summary
Patient Concerns & Information Needs
Study Visits & Time Commitment
Impact on Daily Life & Routines
Treatment Administration & Preferences
Procedures Feedback
Logistics & Accessibility Barriers
Caregiver Perspectives & Patient Support
Motivations for Participation
Challenges to Participation
Patient-Centered Recommendations
Conclusion

Executive Summary
Primary Motivations
Patients are driven by the potential to extend life and improve quality of life, seeing clinical trials as a pathway to better health outcomes than standard treatments.
Key Barriers
Several factors threaten participation: extended visit duration, travel demands, financial strain, unclear communication, and lack of flexibility in trial protocols.
Support Needs
Patients require clearer information, practical accommodations, emotional support, and financial assistance to fully engage with clinical trials.
"Taking part in such a study might preserve life quality compared to classical treatment and, hopefully, save millions of lives."
Phase 1: Asynchronous Virtual Workshop
Savvy designed and executed a comprehensive 5-day virtual workshop with 20 HNSCC patients and caregivers on its dedicated platform to gather rich patient insights.
Key Objective
The primary goal of this workshop was to gather feedback from HNSCC patients on a clinical trial protocol, ensuring patient perspectives shaped the research design.
Interactive Activities
To ensure diverse and deep feedback, fit-for-purpose activities were selected, including:
Multiple choice questions
Free text responses
Likert scales for sentiment
Advanced Methodologies
Beyond basic questions, the workshop integrated sophisticated techniques such as:
Card sorting exercises
Grids and matrices
Projective techniques to uncover deeper perceptions
Asynchronous Design Benefits
The workshop's asynchronous nature allowed for a larger number of participants, accommodating diverse schedules and time zones without conflict.
Demographics of Participants
The virtual workshop engaged a diverse group of 20 HNSCC patients and caregivers, providing a comprehensive range of perspectives on clinical trial experiences. The demographic breakdown is as follows:
Gender
Race/Ethnicity
Country
Age Group
Household Income
Education
Patient Concerns & Information Needs
Withdrawal Process
Patients want clear information about the process and implications of leaving the trial early, particularly regarding continued care options.
Control Group Concerns
Strong requests for access to investigational treatment if cancer progresses while in the control arm of the study.
Eligibility Criteria
Requirements like "good physical fitness" are perceived as too rigid and potentially exclusionary for many patients who could benefit.
Critical Information Gaps
Side effects (known and potential)
Success/failure rates if available
Interaction with existing medications
Quality of life impacts
Post-trial treatment access
"If I was to withdraw due to side effects, what implications would it have for me?"
"I would want to know more about the potential adverse side effects... That would be my only concern."
Interest in Enrolling
Based on the information shared so far, how interested are patients in enrolling in this study?
The survey asked patients to rate their interest in enrolling in the study on a scale of 1 (Not interested) to 5 (Extremely interested). The average rating indicates strong overall interest:
The distribution of responses highlights a clear preference and willingness to participate, with a significant majority expressing high levels of interest:
Key Insight: Overall interest in enrolling is very strong — 80% of participants rated their interest at 4 or 5 on a 5-point scale.
Study Visits
Key Concerns
First visit length (6 hours) perceived as overwhelming and exhausting
Visit frequency (every 21 days) creates significant burden, especially for patients with advanced disease
Transportation and logistics compound the time commitment
Patient Suggestions
Split extended visits across multiple days
Allow local lab work or remote questionnaire completion
Improve communication between scheduled visits
Provide transportation assistance and parking support
Ensure Wi-Fi access and private rooms for longer stays
"The visits every 21 days... could be really difficult for patients and caregivers, especially those who don't live close to the hospital."
Time Commitment & Long-Term Follow-Up
1
Visit Duration
Strong preference to limit visits to approximately 3 hours; current 3-6 hour visits reported as exhausting and disruptive to daily life
2
Study Length
5-year overall commitment perceived as daunting but recognized as valuable for proper assessment of treatment effects and safety
3
Follow-up Preferences
Patients acknowledge follow-up as essential for safety and long-term evaluation, but prefer a mix of in-person, phone, and video formats to reduce burden
"The trial needs information on the effects both near and long term... to provide information for both medical professionals and patients."
Visit Flexibility and Remote Participation
Importance of flexibility in scheduling study visits when deciding whether to participate
This chart illustrates the critical role that flexible scheduling plays in patient willingness to participate in clinical trials. A significant portion of respondents consider it extremely or very important.
The feedback indicates that trial designs incorporating remote elements, adaptable visit times, or reduced on-site burden are more appealing and accessible to potential participants. This not only enhances patient experience but can also improve recruitment and retention rates, leading to more efficient and successful studies.
Key Insight: 60% of patients rated scheduling flexibility as very or extremely important.
Impact on Daily Life
Work Disruption
Long visits conflict with employment obligations, creating financial and career concerns
Family Responsibilities
Trial participation competes with caregiving duties and family commitments
Personal Time
Patients emphasize the importance of protecting time for rest, recovery, and meaningful activities
Side Effect Concerns
Patients worry about how treatment side effects might impact:
Ability to work
Energy for family activities
Independence in daily tasks
Cognitive function
Overall quality of life
"Frequent visits and long appointments may be hard to manage with work or family duties. Distance to the trial site and transportation issues could be a barrier."
Treatment Administration & Preferences
Treatment Preferences
Many strongly desire experimental arm, especially if they have limited treatment options 
Some prefer Treatment B (current standard of care) as it is seen as less time-intensive
Concern about being randomized to control group
Administration Concerns
Infusion takes 2-3 hours, causing discomfort
IV access challenges for some patients
Anxiety about potential reactions during administration
Patient Suggestions
Provide adjustable chairs and entertainment options during infusions
Create comfortable, calming environment for treatment administration
Combine appointments to reduce total number of visits
"Generally if I am opting into a trial I would want to be part of the group receiving the trial drug. Otherwise the additional time and effort is of no direct potential benefit to me as a patient."
Bloodwork and PROs
Bloodwork
Generally accepted as necessary, but patients request:
Thin needles and experienced phlebotomists
Timely results and clear explanations
Minimal repeat draws
"Making the patient understand why this blood work matters can bring cooperation and a feeling of safety."
Patient-Reported Outcomes (PROs)
Mixed views with key concerns:
Length and redundancy of questionnaires
Unclear purpose of some questions
Format preferences (paper vs. digital)
"A quiet comfortable place to complete the questions and privacy to work on these questions at the study visit."
Patients generally understand the value of these procedures but seek improvements in how they're implemented to reduce burden and discomfort.
Biopsies and Imaging
Biopsies
Relatively few concerns beyond pain and recovery time:
Request to use most recent sample when possible
Preference for experienced physicians
Clear explanation of necessity
Adequate pain management
Imaging (CT/MRI)
Several concerns identified:
Noise and confined spaces cause anxiety
"Scanxiety" while waiting for results
Contrast reactions and preparation requirements
Suggestions: Supportive technicians, calming environment, shorter wait times for results
"I have had several biopsies in the past. They have ranged between terrible and worse. Frankly I would rather be unconscious for them, though I know general anesthesia isn't practical. Still I would like to feel as little as possible."
Confidence in Following Study Procedures
How confident are participants in their ability to follow the study procedures?
Understanding patient confidence in adhering to study protocols is vital for successful clinical trials. Participants were asked to rate their confidence level, providing insight into potential compliance and support needs.
The results indicate a predominantly high level of confidence among participants, suggesting strong self-efficacy regarding their ability to fulfill trial requirements.
Key Insight: The vast majority (85%) of participants feel very or extremely confident in their ability to follow trial procedures, suggesting a strong baseline for study compliance.
Logistics & Accessibility Barriers
Travel Time
30 minutes to 2 hours considered acceptable; longer travel creates significant burden, especially for those with advanced disease
Transportation
Fuel costs, public transit expenses, and rideshare services add financial strain and physical fatigue to trial participation
Parking
Cost and availability represent significant barriers, especially at urban medical centers with limited or expensive parking options
Physical Needs
Accommodations needed for mobility limitations, communication assistance, and nutritional support during long visits
"If it includes good financial support along with a healthy outcome... this would be truly worthwhile."
Travel Time Impact on Participation
How would the time it takes to travel to the clinic affect your decision to participate?
The survey asked patients to rate the impact of travel time to the clinic on their decision to participate in a clinical trial, on a scale of 1 (No impact) to 4 (Big impact).
The average rating indicates that travel time has a noticeable effect on participation decisions:
The distribution of responses highlights varying degrees of sensitivity to travel burden among potential participants. While some are unaffected, a significant portion considers travel time a substantial factor:
Key Insight: Most participants reported that travel time has at least some impact on their decision, with over half (60%) rating it as a moderate or big impact.
Travel Cost Impact on Participation
How would the costs of gas or public transportation affect your decision to participate?
The survey asked patients to rate the impact of travel costs (gas or public transportation) on their decision to participate in a clinical trial, on a scale of 1 (No impact) to 4 (Big impact).
The average rating indicates that travel costs have a noticeable effect on participation decisions:
The distribution of responses highlights varying degrees of sensitivity to the financial burden of travel among potential participants:
Key Insight: Over half of participants (55%) reported that transportation costs have a moderate to big impact on their ability to participate in the trial.
Parking Availability and Cost Impact
How does the availability and cost of parking affect your decision to participate in the clinical trial?
The survey assessed how parking availability and cost influence participation decisions, using a 1-4 scale (1 = No impact, 4 = Big impact). The average rating indicates that parking is a noticeable factor:
The responses show a varied but significant concern regarding parking. Many participants face considerable challenges related to parking, impacting their willingness to enroll:
Key Insight: Parking is a significant barrier for many participants: 70% rated it as having a moderate or big impact on their ability to participate.
Rideshare Services and Participation
Would the availability of rideshare services (e.g., Uber or Lyft) help overcome transportation barriers?
The survey asked patients to rate how the availability of rideshare services would influence their decision to participate in a clinical trial, on a scale of 1 (No impact) to 4 (Big impact).
The average rating indicates that rideshare services have a relatively low perceived impact on participation decisions:
The distribution of responses reveals that for a significant portion of patients, rideshare availability is not a primary factor affecting their participation decisions:
Key Insight: For most participants, rideshare availability was not a major factor—nearly half rated it as having no impact on their ability to participate.
Caregiver Perspectives & Patient Support
Caregiver Concerns
Need for scheduling flexibility to accommodate work
Emotional strain of supporting trial participants
Tools for speech/swallowing challenges
Nutritional guidance and dietitian support
Financial impact of caregiving responsibilities
Patient Support Needs
Regular nurse check-ins between scheduled visits
Designated point of contact for questions and concerns
Online resources and educational materials
Peer support groups (in-person or virtual)
Psychological support services
"Regular check-ins with a nurse or study coordinator would help us feel more supported and informed."
"Support group via WhatsApp or a forum would be a big help... A psychological support could be helpful, because such a treatment is a big deal."
Preferred Trial Support Tools
What type of technology and services would participants like or be okay using during the clinical trial?
Patients expressed a clear preference for digital and flexible tools to support their participation in clinical trials. The chart below illustrates the level of enthusiasm for various technologies and services.
Key Insight: Patients strongly prefer digital and flexible support options (apps, telehealth, at-home questionnaires) over traditional methods like mailed reminders or paper journals.
The data indicates a clear shift towards convenience and integration with daily life. Tools that allow participants to manage their trial activities from home or via personal devices are highly favored, suggesting that incorporating these options can significantly enhance patient engagement and retention.
Conversely, methods like physical journals and mailed reminders received higher "would not like it" responses, underscoring the need for trial designs to modernize their patient support strategies.
Communication Preferences with Study Team
How would participants like to communicate with the clinical trial team for different needs?
Understanding patient preferences for communication channels is crucial for effective trial management. The data below outlines preferred methods for various types of interactions, highlighting a clear distinction between routine and sensitive communications.
Key Insight: Patients overwhelmingly prefer email and text for routine communication, but prefer phone, video, or in-person contact for sensitive issues such as side effects or clinical discussions.
This demonstrates a need for a multi-channel communication strategy that balances convenience for patients with the need for direct, personal interaction when addressing critical health concerns. Adapting communication methods to the nature of the inquiry can significantly enhance patient satisfaction and engagement.
Preferred Format for Supportive Materials
What format of trial materials do participants prefer during the study?
Understanding the preferred format for trial materials is essential to ensure participants have easy access to information and feel supported throughout their journey. We asked patients about their preferences for receiving supportive documents.
The survey results reveal a strong inclination towards digital resources, with a significant portion of participants valuing the flexibility of having both digital and printed options. This diverse preference highlights the importance of offering multiple formats to cater to individual needs and accessibility requirements.
While digital-first strategies are increasingly popular, the demand for printed materials, either exclusively or in combination, suggests that a hybrid approach may maximize patient engagement and comprehension of vital trial information.
Key Insight: Most patients (80%) want access to digital materials, but nearly half prefer a combination of printed and digital to accommodate different needs.
Motivations for Participation
Core Drivers of Clinical Trial Participation
Access to Novel Treatments
Opportunity to receive cutting-edge therapies not available through standard care, potentially offering better outcomes
Extended Life & Improved Quality
Hope for prolonged survival with better symptom management and fewer side effects than conventional treatments
Contribution to Science
Desire to help advance medical knowledge and improve treatment options for future patients facing similar diagnoses
"Improved diagnosis, higher quality of life."
"I believe that patients would be very interested in enrolling in this study. Having access to new treatments that can improve life and help a person live longer are so important."
Challenges to Participation
Time Burden
Extended visit length (up to 6 hours)
Frequent visits (every 21 days)
5-year commitment to follow-up
Travel time to research centers
Financial Strain
Transportation costs
Parking expenses
Lost wages from missed work
Childcare arrangements
Accommodation needs
Emotional Stress
"Scanxiety" waiting for results
Uncertainty about side effects
Balancing family roles and needs
Managing expectations
"The biggest thing would be knowing that when I contact the team, I will get a response quickly. Waiting as a patient when you have a need is often the scariest part."
Patient-Centered Recommendations
Enhanced Communication
Provide clear information on side effects, withdrawal process, and long-term risks/benefits. Create comprehensive educational materials in accessible formats.
Protocol Flexibility
Implement remote options for labs/PROs where possible, offer hybrid follow-up models, and provide scheduling accommodations for working patients.
Comprehensive Support
Offer transportation assistance, parking vouchers, peer support networks, and emotional health services throughout the trial journey.
Patient-Friendly Design
Structure shorter visits where possible, reduce scan/test burden, and combine appointments to minimize disruption to patients' lives.
"I would like to have people around, who could help me understand what is really happening... People who know that I am a personality and not just a body."
Conclusion
Patients demonstrate strong interest and willingness to participate in clinical trials, primarily driven by hope for improved health outcomes and the opportunity to advance medical science.
The barriers they identify are predominantly practical and emotional, not related to their willingness to contribute to research. These include time commitments, logistical challenges, financial burdens, and emotional stressors.
Meeting patient needs requires a three-pronged approach:
Transparency in all trial communications
Flexibility in procedures and scheduling
Comprehensive support systems for patients and caregivers
"My life would be the biggest benefit."
This simple statement captures the core motivation for patient participation and should guide all aspects of trial design and implementation. When we center the patient experience, we create trials that not only generate valuable scientific data but also honor the humanity of those who make research possible.
Thank you for taking the time to #AskPatients!
What's next? Keep engaging with patients with a regular cadence to help ensure your clinical trial development and launch are a success!
On behalf of all of our Savvy members, thank you for working to improve the lives of patients!