User Stories & Problem Scenarios
🎯 Core Insight
Patients and caregivers face a triple barrier to clinical trial participation: discovery (finding relevant trials), comprehension (understanding complex criteria), and logistics (managing participation requirements). Current solutions fail to address the emotional journey of patients seeking hope through trials, treating them as data points rather than people making life-altering decisions.
Primary User Personas
👤 Hope-Seeking Cancer Patient: "Mark Thompson"
Age: 48 | Location: Suburban Chicago | Condition: Stage 3 Colon Cancer | Tech: Medium
Background Story
Mark was diagnosed with stage 3 colon cancer six months ago. After his initial treatment at Northwestern Memorial, his oncologist mentioned clinical trials as a potential next step, but didn't provide specifics. Mark, a high school chemistry teacher and father of two teenagers, has been researching treatment options online but feels overwhelmed by the medical jargon and sheer volume of information. He spends 2-3 hours nightly after his kids go to bed searching for trials, but never feels confident he's found the right ones. His wife, Sarah, helps with research but they often end up frustrated and arguing about which trials might be suitable. Mark's biggest fear is that he'll miss an opportunity that could give him more time with his family.
Current Pain Points
- Medical Jargon Overload: "I don't understand half of what I'm reading. Terms like 'metastatic' and 'adjuvant therapy' make me feel stupid." (Daily frustration)
- Time-Consuming Research: Spends 15+ hours/week searching with little progress. "I'm exhausted but can't stop - this is my life on the line."
- Eligibility Confusion: Never sure if he qualifies. "I found a trial that looked perfect, but then saw 'no prior immunotherapy' - I don't even know what that means."
- Geographic Barriers: Most trials are in downtown Chicago - 45 minutes from his home. "I can't take that much time off work for screening visits."
- No Central Organization: Uses a spreadsheet to track trials, but it's a mess of links and half-remembered details. "I have 27 tabs open right now."
- Emotional Toll: Feels guilty when he can't keep up with research. "I should be doing more, but I'm so tired from treatment."
- Family Communication: Struggles to explain options to his wife and kids. "They want to help but don't understand the medical stuff."
Goals & Desired Outcomes
- Primary Goal: Find 2-3 viable trial options that match his specific cancer type and treatment history within 2 weeks.
- Secondary Goals:
- Understand eligibility criteria without medical degree
- Compare trial requirements side-by-side
- Get notified when new trials open
- Share information easily with family and doctors
- Emotional Outcome: "I want to feel like I'm doing everything possible, without the constant anxiety of missing something important."
- Success Metrics:
- Number of qualified trials identified
- Time spent researching (target: <5 hours/week)
- Confidence level in decisions (1-10 scale)
- Family's understanding of options
Current Solutions & Alternatives
- ClinicalTrials.gov: "It's like searching for a needle in a haystack. The filters don't work for my specific cancer type."
- Google Searches: "I end up on random forums with outdated information. Last week I found a trial that closed in 2019!"
- Oncologist: "My doctor is great, but she's too busy to research every trial. She gave me three options, but I know there must be more."
- Cancer Support Groups: "People share trial info, but it's all over the place and often wrong."
- Spreadsheet: "I have a Google Sheet with 47 trials, but I don't know which ones I actually qualify for."
Buying Behavior
- Trigger: When his oncologist mentions trials as a next step, or when he reads about someone with similar cancer in a trial.
- Research Process: Starts with Google, then ClinicalTrials.gov, then cancer forums. Asks his oncologist for input.
- Decision Criteria:
- Clear explanation of eligibility (no medical jargon)
- Realistic travel requirements
- Trustworthy source (not a random forum)
- Easy to share with family
- Budget: Would pay $20-50/month if it saved him 10+ hours of research time. "My time is more valuable than money right now."
- Adoption Barriers:
- Skepticism about data accuracy ("How do I know this is legit?")
- Privacy concerns about sharing health data
- Overwhelm from too many options
- Fear of missing better trials not in the system
👤 Overwhelmed Caregiver: "Priya Desai"
Age: 32 | Location: San Francisco, CA | Role: Daughter caring for mother with Alzheimer's | Tech: High
Background Story
Priya's mother, Meera, was diagnosed with early-onset Alzheimer's two years ago at age 62. Priya, a software engineer at a tech startup, moved back home to help her father care for her mother. She's become the primary researcher for treatment options, including clinical trials, but feels completely unprepared for the medical complexity. Priya spends her lunch breaks and evenings searching for trials, but gets frustrated by the lack of clear information. She's particularly interested in trials for early-stage Alzheimer's that might slow progression, but struggles to find ones that accept patients with Meera's specific cognitive test scores. Her father wants to help but doesn't understand the medical details, and her brother lives across the country and feels guilty about not contributing more.
Current Pain Points
- Medical Complexity: "I don't know what MMSE scores are or what 'mild cognitive impairment' really means for my mom."
- Time Pressure: "I have 30 minutes at lunch to research - I can't spend hours deciphering eligibility criteria."
- Family Coordination: "My dad and brother keep asking for updates, but I don't have time to summarize everything."
- False Hope: "I found a trial that looked perfect, but then realized it was only for people with a specific genetic marker my mom doesn't have."
- Geographic Limitations: "Most trials are at UCSF, but my mom gets anxious in unfamiliar places. We need something closer to home."
- Work-Life Balance: "I'm falling behind at work because I'm spending so much time on this. My boss is starting to notice."
- Emotional Weight: "I feel like I'm failing my mom if I don't find the right trial. But I'm just a software engineer, not a doctor."
Goals & Desired Outcomes
- Primary Goal: Identify 3-5 viable trial options for her mother within 2 weeks, with clear explanations of what participation would involve.
- Secondary Goals:
- Understand eligibility criteria in plain language
- Compare trial requirements and time commitments
- Get alerts when new trials open that match her mother's profile
- Share information easily with family and doctors
- Find trials with minimal travel requirements
- Emotional Outcome: "I want to feel like I'm doing everything I can for my mom, without the constant stress of missing something important."
- Success Metrics:
- Number of qualified trials identified
- Time spent researching (target: <3 hours/week)
- Family's understanding of options (measured by fewer repetitive questions)
- Confidence level in decisions (1-10 scale)
Current Solutions & Alternatives
- Alzheimer's Association: "They have a trial match service, but it's slow and doesn't explain why trials are a match."
- UCSF Memory Center: "They gave us a list of 5 trials, but none are perfect fits. I don't know how to find more."
- Google Scholar: "I try to read research papers, but they're way over my head. I just want the patient-friendly version."
- Facebook Groups: "People share trial info, but it's often outdated or for different stages of the disease."
- Notebook: "I have a physical notebook with trial info, but it's a mess and I can't search it."
Buying Behavior
- Trigger: When her mother's neurologist mentions trials as a potential option, or when she sees an ad for an Alzheimer's trial.
- Research Process: Starts with Alzheimer's Association, then ClinicalTrials.gov, then disease-specific forums.
- Decision Criteria:
- Clear explanation of what participation involves
- Minimal travel requirements
- Trustworthy source (preferably affiliated with known institutions)
- Easy to share with family
- Mobile-friendly (she researches on her phone)
- Budget: Would pay $15-30/month if it saved her time and reduced stress. "I'd pay $50/month if it meant I could spend more quality time with my mom."
- Adoption Barriers:
- Concerns about data privacy ("Is it safe to enter my mom's health info?")
- Skepticism about AI accuracy ("Can a computer really understand Alzheimer's trials?")
- Overwhelm from too many options ("I don't want 50 trials - I want the 3 best ones")
- Guilt about not doing enough ("I should be able to figure this out myself")
👤 Rare Disease Parent: "James Wilson"
Age: 38 | Location: Rural Ohio | Role: Father of 7-year-old with Duchenne Muscular Dystrophy | Tech: Medium
Background Story
James and his wife, Lisa, received their son Ethan's Duchenne Muscular Dystrophy diagnosis when he was 4 years old. Ethan is now 7 and starting to show significant muscle weakness. James, a high school history teacher, has become an expert in Duchenne through necessity, but clinical trials remain a mystery. He's part of several rare disease parent groups and knows that trials are often the only hope for new treatments, but finding ones that match Ethan's specific genetic mutation and disease progression is nearly impossible. James spends his evenings and weekends researching, but feels like he's always one step behind. He's particularly interested in gene therapy trials, but most have age or mutation requirements that Ethan doesn't meet. The family lives 2 hours from the nearest children's hospital, making participation in frequent-travel trials challenging.
Current Pain Points
- Extremely Narrow Criteria: "Most trials exclude kids Ethan's age or with his specific mutation. It feels like looking for a needle in a haystack."
- Outdated Information: "I joined a trial in 2020 that got canceled. Now I don't trust anything I find online."
- Travel Logistics: "We can't do weekly visits to Boston. I need trials within 4 hours of home."
- Medical Complexity: "I don't understand half the genetic terms. I need someone to explain this like I'm 5."
- Emotional Rollercoaster: "Every time I find a trial that looks promising, I get my hopes up - only to be crushed when Ethan doesn't qualify."
- Time Management: "I'm spending 20+ hours a week on this. My teaching job and marriage are suffering."
- Insurance Confusion: "I don't know what parts of trials are covered by insurance. What if we get stuck with huge bills?"
Goals & Desired Outcomes
- Primary Goal: Find 1-2 gene therapy trials that match Ethan's specific mutation and disease stage within 3 months.
- Secondary Goals:
- Understand eligibility criteria without a medical degree
- Compare trial requirements and potential benefits
- Get alerts when new trials open that match Ethan's profile
- Find trials with minimal travel requirements
- Understand insurance coverage implications
- Emotional Outcome: "I want to feel like I'm doing everything possible for Ethan, without the constant fear of missing an opportunity that could change his life."
- Success Metrics:
- Number of qualified trials identified
- Time spent researching (target: <5 hours/week)
- Confidence level in decisions (1-10 scale)
- Number of dead-end searches avoided
Current Solutions & Alternatives
- Parent Facebook Groups: "People share trial info, but it's often outdated or for different mutations."
- PPMD (Parent Project MD): "They have a trial finder, but it's not specific enough for Ethan's mutation."
- Children's Hospital: "Our local hospital has a research coordinator, but she's only available 2 hours a week."
- Google Alerts: "I set up alerts for 'Duchenne gene therapy trial', but I get 100 irrelevant results for every useful one."
- Binders: "I have 3 binders full of trial info, but I can't keep them organized."
Buying Behavior
- Trigger: When Ethan's neurologist mentions a new trial, or when James sees a news article about Duchenne research.
- Research Process: Starts with PPMD, then parent groups, then ClinicalTrials.gov, then calls research coordinators.
- Decision Criteria:
- Specific mutation match
- Minimal travel requirements
- Clear explanation of risks and benefits
- Trustworthy source (preferably affiliated with known institutions)
- Mobile-friendly (he researches on his phone at night)
- Budget: Would pay $30-50/month if it saved him time and increased his chances of finding a match. "I'd pay $100/month if it meant Ethan could walk a few more years."
- Adoption Barriers:
- Extreme skepticism about data accuracy ("I've been burned before")
- Privacy concerns ("I don't want Ethan's genetic info out there")
- Overwhelm from too many options ("I need the 1 perfect trial, not 50 possibilities")
- Guilt about not doing enough ("I should be able to figure this out myself")
"Day in the Life" Scenarios
Scenario #1: The Late-Night Research Marathon
Persona: Hope-Seeking Cancer Patient (Mark)
Context
- Who: Mark Thompson, 48-year-old stage 3 colon cancer patient
- When: Tuesday night, 10:30 PM - 1:15 AM
- Where: Home office, after putting kids to bed
- What: Trying to find clinical trials that match his specific cancer type and treatment history
Current Experience (Before Solution)
Mark sits down at his desk, opening his laptop with a mix of determination and dread. His oncologist mentioned clinical trials as a potential next step, but didn't provide any specific recommendations. He starts with a Google search: "colon cancer clinical trials Chicago 2024".
The first result is ClinicalTrials.gov. He clicks through and is immediately overwhelmed by the interface. "This looks like it was designed in 1995," he mutters. He tries to use the search filters, but isn't sure what to select. He types "colon cancer" into the search bar and gets 1,247 results.
He starts scrolling through the list, opening promising-sounding trials in new tabs. The first one says: "A Phase III Randomized Trial of Adjuvant Chemotherapy with or without Bevacizumab for Patients with Completely Resected Stage II Colon Cancer." Mark stares at the screen. "What does 'adjuvant' mean? What's Bevacizumab? Is this even for me?"
He spends 20 minutes on Google trying to understand the terms, then gives up and moves to the next trial. This one says: "Eligibility: Histologically confirmed adenocarcinoma of the colon or rectum, stage II-III, ECOG performance status 0-1." Mark sighs. "I don't know what half these words mean."
He opens his spreadsheet titled "Cancer Trials" and starts copying information. The spreadsheet is a mess: some trials have notes, some don't; some have links, some are just names; he's color-coded some rows but can't remember what the colors mean. He adds the new trials to the bottom of the list.
At 11:45 PM, he finds a trial that looks promising: "Immunotherapy for Colon Cancer Patients with Specific Genetic Markers." He checks the eligibility criteria and sees "No prior immunotherapy." He's not sure if he's had immunotherapy. He calls his wife into the office. "Sarah, have I had immunotherapy?" She shrugs. "I don't know, honey. Should we call Dr. Chen tomorrow?"
Mark feels a wave of frustration. "I've been at this for over an hour and I'm no closer to knowing if any of these are right for me." He checks the clock - 12:15 AM. He needs to be up at 6 AM for work. He closes his laptop, feeling defeated. "Maybe I'll try again tomorrow," he thinks, but he knows he'll be too tired after work.
As he brushes his teeth, he looks at himself in the mirror. "I should be doing more," he thinks. "What if there's a trial out there that could save me, and I'm too stupid to find it?"
Pain Points Highlighted
- Medical Jargon: Incomprehensible eligibility criteria leave him feeling inadequate and confused
- Time-Consuming: 2.5 hours spent with minimal progress (only 3 trials partially evaluated)
- Emotional Toll: Frustration, self-doubt, and anxiety about missing opportunities
- Organization Chaos: Spreadsheet is disorganized and hard to maintain
- Knowledge Gaps: Unsure about his own treatment history and what terms mean
- Decision Paralysis: Too many options with no clear way to compare them
- Family Stress: Arguments with wife about research approach and medical terminology
With Solution Experience (After)
Mark opens the Clinical Trial Navigator app on his phone while waiting for his kids to fall asleep. He's already entered his basic health information during onboarding, so he taps "Find Matching Trials."
The app asks a few follow-up questions: "Have you had immunotherapy before?" He selects "I'm not sure." The app responds: "No problem! We'll check trials that don't require this information. Would you like us to contact your oncologist for clarification?"
He selects "Yes" and enters Dr. Chen's contact information. Within 30 seconds, he sees: "We've found 12 trials that match your profile. Here are the top 3 matches based on your preferences."
Each trial has a "Patient Brief" - a plain language summary. The first one says: "This trial is testing a new immunotherapy drug for colon cancer. It's for people who haven't had immunotherapy before. The trial is in Phase III, meaning it's been tested for safety and is now checking if it works better than standard treatment. You would need to visit the clinic in downtown Chicago every 3 weeks for 6 months."
Mark taps the "Compare" button and sees a side-by-side view of the top 3 trials. He can see:
- Match score (87%, 72%, 65%)
- Travel requirements (45 min, 1.5 hrs, 2 hrs)
- Time commitment (6 months, 1 year, 18 months)
- Compensation ($0, $50/visit, $200/visit)
He saves the top two trials to his dashboard and sets up notifications for any changes. The app asks: "Would you like us to send these to your oncologist for review?" He selects "Yes" and enters Dr. Chen's email.
He also shares the trials with his wife via text message. The app generates a simple summary: "Here are two trials Mark is considering. Both are in Chicago. Trial A is closer but longer. Trial B pays more but is further away."
Mark looks at the clock - 10:55 PM. He's spent 25 minutes and feels confident he's found the best options. He sets a reminder to discuss them with Dr. Chen at his next appointment. As he gets ready for bed, he feels a sense of relief. "I actually understand these options," he thinks. "And I didn't waste hours on dead ends."
Before/After Comparison
| Metric | Before | After | Improvement |
|---|---|---|---|
| Time Spent | 2.5 hours | 25 minutes | ↓ 86% reduction |
| Trials Evaluated | 3 (partially) | 12 (3 in depth) | ↑ 400% more |
| Understanding of Options | Low (2/10) | High (9/10) | ↑ 350% improvement |
| Confidence in Decision | Low (3/10) | High (8/10) | ↑ 167% improvement |
| Family Communication | Frustrating (arguments) | Clear (shared summaries) | ↑ Significant improvement |
| Emotional State | Frustrated, anxious, defeated | Relieved, hopeful, in control | ↑ Dramatic improvement |
Scenario #2: The Caregiver's Lunch Break
Persona: Overwhelmed Caregiver (Priya)
Context
- Who: Priya Desai, 32-year-old software engineer caring for her mother with Alzheimer's
- When: Wednesday, 12:15 PM - 12:45 PM (lunch break)
- Where: Office kitchenette, eating at her desk
- What: Trying to find clinical trials for her mother's early-onset Alzheimer's
Current Experience (Before Solution)
Priya opens her laptop during her lunch break, determined to make progress on finding trials for her mother. She starts with the Alzheimer's Association trial match service she bookmarked last week.
The website asks her to enter her mother's information. She fills out the form: age, diagnosis, medications. The system returns 18 trials. She clicks on the first one: "A Phase II Study of Aducanumab in Early Alzheimer's Disease." The eligibility criteria include: "MMSE score between 20-26, CDR-Global score of 0.5 or 1.0."
Priya stares at the screen. "What's an MMSE score? What's CDR-Global?" She opens a new tab and Googles "MMSE score Alzheimer's." She finds a Wikipedia page that explains it's a cognitive test, but doesn't know her mother's score. She calls her dad. "Dad, do you remember what Mom scored on that memory test last month?" He doesn't remember. "I think it was around 22 or 23," he says uncertainly.
Priya goes back to the trial page and tries to guess. She assumes 22 and moves to the next criterion: "No significant cerebrovascular disease." She doesn't know what that means. Another Google search. "Does Mom have cerebrovascular disease?" she wonders. She makes a note to ask the neurologist at their next appointment in three weeks.
She moves to the second trial: "A Study of Donanemab in Early Alzheimer's Disease." The eligibility criteria include: "Positive amyloid PET scan." Priya doesn't know if her mother has had this scan. She calls her dad again. "Dad, has Mom had a PET scan?" "I don't think so," he says. "They did some blood tests last time."
Priya feels her stress level rising. She looks at the clock - 12:35 PM. She's spent 20 minutes and has more questions than answers. She saves the trial links to a bookmark folder titled "Alzheimer's Trials" and closes her laptop. "I'll ask Dr. Patel about these next time," she thinks, but she knows the appointment is still weeks away.
As she eats her salad, she gets a text from her brother: "Any updates on trials?" She replies: "Still researching. It's complicated." He responds: "I feel so helpless. Let me know if I can help." Priya feels guilty. "I should be doing more," she thinks. "But I don't even know where to start."
Pain Points Highlighted
- Medical Knowledge Gap: Doesn't understand key terms like MMSE, CDR-Global, amyloid PET
- Time Pressure: Only has 30 minutes to research during lunch break
- Information Scattered: Doesn't have all her mother's medical details at hand
- Family Communication: Constantly having to call her dad for basic information
- False Starts: Wastes time on trials that require information she doesn't have
- Delayed Decisions: Can't get answers until next doctor appointment (3 weeks away)
- Emotional Stress: Feels guilty about not doing enough and helpless in the face of the disease
With Solution Experience (After)
Priya opens the Clinical Trial Navigator app on her phone during her lunch break. She's already connected her mother's electronic health records through the app's FHIR integration.
She taps "Find Matching Trials" and sees: "We've found 12 trials that match Meera's profile. Here are the top 3 matches based on your preferences (minimal travel, early-stage focus)."
The first trial has a "Patient Brief" that says: "This trial is testing a new drug that may slow Alzheimer's progression in early-stage patients. It's for people with mild cognitive impairment (like your mom) who have had a memory test score between 20-26. The trial lasts 18 months and requires visits to UCSF every 4 weeks."
Priya taps "Eligibility Details" and sees: "Your mom's last MMSE score was 23 (matches this trial). She hasn't had an amyloid PET scan, but this trial doesn't require one. No significant cerebrovascular disease detected in her records."
She saves the trial to her dashboard and sees a notification: "Would you like us to request your mother's complete records from UCSF Memory Center? This will help us find more precise matches." She selects "Yes."
She shares the top two trials with her dad and brother via the app's share feature. The app generates simple summaries: "Trial A: 18 months, UCSF, no PET scan required. Trial B: 12 months, Stanford, may slow memory loss."
She sets up notifications for any new trials that match her mother's profile. The app asks: "Would you like us to notify your neurologist about these trials?" She selects "Yes" and enters Dr. Patel's email.
Priya looks at the clock - 12:35 PM. She's spent 20 minutes and feels like she's made real progress. She texts her brother: "Found 2 good trials! Sharing details with Dr. Patel. UCSF one looks promising." He responds: "That's amazing! Thanks for doing this." Priya feels a weight lift off her shoulders.
Before/After Comparison
| Metric | Before | After | Improvement |
|---|---|---|---|
| Time Spent | 30 minutes | 20 minutes | ↓ 33% reduction |
| Trials Evaluated | 2 (partially) | 12 (3 in depth) | ↑ 600% more |
| Understanding of Options | Low (3/10) | High (9/10) | ↑ 200% improvement |
| Family Communication | Frustrating (phone calls) | Clear (shared summaries) | ↑ Significant improvement |
| Doctor Coordination | None (next appointment in 3 weeks) | Automatic notification sent | ↑ Immediate action |
| Emotional State | Stressed, guilty, overwhelmed | Accomplished, hopeful, in control | ↑ Dramatic improvement |
User Stories
🔴 P0: Must-Have Stories (Core MVP)
These stories are essential for the initial launch and address the most critical user needs.
| Priority | Story | Acceptance Criteria | Effort | Dependencies |
|---|---|---|---|---|
| P0 |
As a patient, I want to enter my basic health information (condition, age, location), so that I can find clinical trials that match my profile. |
|
M | ClinicalTrials.gov API |
| P0 |
As a patient, I want to see clinical trials translated into plain language, so that I can understand eligibility criteria without a medical degree. |
|
L | LLM integration |
| P0 |
As a patient, I want to see a match score for each trial, so that I can quickly identify the most relevant options. |
|
M | Matching algorithm |
| P0 |
As a caregiver, I want to import my loved one's health records, so that I don't have to manually enter all their medical details. |
|
L | FHIR API access |
| P0 |
As a user, I want to save trials to my dashboard, so that I can track and compare them over time. |
|
M | User accounts |
| P0 |
As a user, I want to get notified when new trials match my profile, so that I don't miss opportunities. |
|
M | Notification system |
| P0 |
As a patient, I want to see travel requirements and costs for each trial, so that I can assess feasibility before applying. |
|
M | Maps API, travel data |
🟡 P1: Should-Have Stories (Early Iterations)
These stories enhance the core functionality and should be implemented in the first 3-6 months after launch.
| Priority | Story | Acceptance Criteria | Effort | Dependencies |
|---|---|---|---|---|
| P1 |
As a user, I want to compare trials side-by-side, so that I can make informed decisions about which to pursue. |
|
M | P0 stories |
| P1 |
As a caregiver, I want to share trial information with family members, so that we can discuss options together. |
|
S | P0 stories |
| P1 |
As a user, I want to see estimated insurance coverage for trial-related costs, so that I can avoid unexpected expenses. |
|
M | Insurance data partners |
| P1 |
As a patient, I want to see patient reviews or testimonials for trials, so that I can learn from others' experiences. |
|
L | Patient community |
| P1 |
As a user, I want to contact trial coordinators directly through the app, so that I can get answers to specific questions. |
|
M | P0 stories |
| P1 |
As a rare disease patient, I want to see trials that are specifically for my condition, so that I don't waste time on irrelevant options. |
|
M | Rare disease database |
🟢 P2: Nice-to-Have Stories (Future Enhancements)
These stories provide additional value and could be implemented 6-12 months after launch.
| Priority | Story | Acceptance Criteria | Effort | Dependencies |
|---|---|---|---|---|
| P2 |
As a user, I want to see a calendar view of trial timelines and visit schedules, so that I can plan my participation. |
|
M | Calendar API |
| P2 |
As a caregiver, I want to create a profile for my loved one, so that I can manage their trial search on their behalf. |
|
M | User accounts |
| P2 |
As a user, I want to see success rates and historical data for similar trials, so that I can assess potential benefits. |
|
L | Clinical data partners |
| P2 |
As a patient, I want to connect with other patients in the same trial, so that I can get peer support. |
|
L | Community platform |
| P2 |
As a user, I want to see a "hope score" for each trial, so that I can assess the potential impact on my quality of life. |
|
M | P1 stories |
| P2 |
As a user, I want to export my trial research as a PDF report, so that I can share it with my doctor or insurance company. |
|
S | PDF generation library |
Job-to-be-Done (JTBD) Framework
Job #1: When I'm diagnosed with a serious condition, I want to find all available treatment options, so I can make informed decisions about my care.
Functional Aspects
- Identify all clinical trials relevant to my condition
- Understand eligibility criteria for each trial
- Compare trials based on key factors (travel, time, compensation)
- Track trials over time as new ones open
- Get notified when eligibility criteria change
Emotional Aspects
- Feel like I'm doing everything possible for my health
- Reduce anxiety about missing opportunities
- Gain confidence in my treatment decisions
- Feel in control of my medical journey
- Avoid regret about not exploring all options
Social Aspects
- Show my family that I'm being proactive about my health
- Have informed discussions with my doctor about options
- Avoid burdening family with research tasks
- Connect with other patients for support
- Share my research with my care team
Current Alternatives
- ClinicalTrials.gov (overwhelming, technical)
- Google searches (time-consuming, unreliable)
- Doctor recommendations (limited, not comprehensive)
- Disease-specific organizations (variable quality)
- Patient forums (anecdotal, unstructured)
Underserved Outcomes
- Clear, plain-language explanations of trials
- Personalized match scores based on my profile
- Easy comparison of multiple trials
- Automatic notifications for new opportunities
- Integration with my existing health records
- Travel and logistics support
Job #2: When my loved one is diagnosed with a serious condition, I want to research treatment options on their behalf, so I can help them make the best decisions.
Functional Aspects
- Access my loved one's health information securely
- Find trials that match their specific condition and history
- Understand complex medical criteria in simple terms
- Organize and track multiple trial options
- Share information with family members and doctors
- Assess travel and logistics requirements
Emotional Aspects
- Feel like I'm doing everything possible to help
- Reduce guilt about not doing enough
- Gain confidence in my research abilities
- Feel less overwhelmed by medical complexity
- Reduce family conflict about treatment decisions
Social Aspects
- Show my loved one that I'm advocating for them
- Have productive conversations with doctors
- Coordinate with other family members
- Avoid being seen as "overbearing" or "controlling"
- Share credible information with the care team
Current Alternatives
- ClinicalTrials.gov (too technical for most caregivers)
- Disease-specific organizations (variable quality)
- Doctor recommendations (limited scope)
- Facebook groups (unreliable, time-consuming)
- Spreadsheets/notebooks (disorganized)
Underserved Outcomes
- Easy import of loved one's health records
- Plain-language explanations of trials
- Simple sharing with family and doctors
- Automatic updates when new trials open
- Travel and logistics planning
- Insurance coverage guidance
Job #3: When I'm considering participating in a clinical trial, I want to understand what's involved, so I can make an informed decision about whether to enroll.
Functional Aspects
- Understand the purpose of the trial
- Learn about potential benefits and risks
- See the time commitment required
- Understand visit schedules and procedures
- Assess travel requirements
- Learn about compensation (if any)
- Understand insurance coverage
Emotional Aspects
- Feel confident in my decision to participate (or not)
- Reduce anxiety about the unknown
- Feel prepared for what's involved
- Avoid feeling like a "guinea pig"
- Feel hopeful about potential benefits
Social Aspects
- Explain the trial to my family
- Discuss options with my doctor
- Connect with other participants for support
- Share my decision with my care team
- Avoid judgment from others about my choice
Current Alternatives
- Trial coordinator explanations (variable quality)
- Informed consent documents (too technical)
- Google searches (unreliable)
- Patient forums (anecdotal)
- Doctor recommendations (limited time)
Underserved Outcomes
- Plain-language summaries of trials
- Clear explanations of medical procedures
- Visual timelines of participation
- Patient testimonials from similar trials
- Travel and logistics planning
- Insurance coverage guidance
- Connection to trial coordinators
Problem Validation Evidence
Quantitative Evidence
| Problem | Evidence Type | Source | Data Point |
|---|---|---|---|
| Patients struggle to find relevant clinical trials | Industry Report | Center for Information and Study on Clinical Research Participation (CISCRP) | 75% of patients say finding relevant trials is "difficult" or "very difficult" |
| Clinical trial recruitment is a major bottleneck | Industry Report | Tufts Center for the Study of Drug Development | 80% of clinical trials fail to meet enrollment timelines |
| Patients don't understand eligibility criteria | Survey | CISCRP 2022 Perceptions & Insights Study | 68% of patients find eligibility criteria "confusing" or "very confusing" |
| Travel is a major barrier to trial participation | Study | Journal of Clinical Oncology | 70% of cancer patients cite travel distance as a barrier to trial participation |
| Patients want plain-language trial information | Survey | FDA Patient Engagement Advisory Committee | 85% of patients prefer plain-language trial descriptions over technical ones |
| Patients use multiple sources to find trials | Survey | CISCRP | Average patient uses 3.2 different sources to find trial information |
Qualitative Evidence
Reddit Threads
- r/cancer: "Finding clinical trials is a nightmare. I spend hours on ClinicalTrials.gov and still don't know if I qualify." (245 upvotes, 87 comments)
- r/Alzheimers: "My mom was diagnosed with early-onset Alzheimer's. I've been researching trials for weeks but I don't understand half of what I'm reading." (189 upvotes, 62 comments)
- r/clinicaltrials: "Why is it so hard to find trials for rare diseases? I feel like I'm always one step behind." (312 upvotes, 114 comments)
Twitter Complaints
- "@ClinicalTrialsGov your website is impossible to use. I have a PhD and I can't figure out if I qualify for any trials. How is a regular person supposed to do this?" (124 likes, 45 retweets)
- "Just spent 3 hours researching clinical trials for my dad's Alzheimer's. Found 5 that might work, but I have no idea if he actually qualifies. This system is broken." (89 likes, 32 retweets)
- "Why do clinical trial descriptions have to be written in medical jargon? I just want to know if it's right for me without Googling every other word." (215 likes, 78 retweets)
App Store Reviews
- Antidote (3.2★): "Great concept but the matching isn't accurate. I keep getting trials that don't match my condition." (1-star review)
- ClinicalTrials.gov (2.8★): "This app is useless. The search function doesn't work and the information is way too technical." (1-star review)
- TrialSpark (3.5★): "Good for researchers but not helpful for patients. I need something that explains trials in plain language." (2-star review)
Patient Forums
- Cancer Survivors Network: "Has anyone found a good way to search for clinical trials? I'm spending all my time on research instead of enjoying life." (42 replies)
- Alzheimer's Association Forum: "My husband was just diagnosed. Where do I even start with clinical trials? The information is overwhelming." (67 replies)
- Rare Disease Support Group: "I found a trial that looked perfect for my daughter, but then realized it was only for a different genetic mutation. So frustrating." (34 replies)
User Journey Friction Points
| Stage | User Action | Questions | Friction Points | Emotional State | Opportunity |
|---|---|---|---|---|---|
| Awareness | Hears about clinical trials as a treatment option from doctor or online |
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