User Stories & Problem Scenarios
Clinical Trial Navigator - Deep Dive into Patient & Caregiver Empathy
1 Primary User Personas
Determined Deborah
The Proactive Patient
Background: Former teacher now on disability. Exhausted standard treatment options. Highly motivated but overwhelmed by the sheer volume of medical information online. She feels a "clock ticking" and wants to be proactive rather than passive.
Top Pain Points:
- Can't understand "exclusion criteria" jargon.
- Fears missing a trial because she doesn't check ClinicalTrials.gov daily.
- Unsure if a trial location is financially feasible.
Goal: Find a viable treatment option that offers hope or extended quality of life.
Budget: Willing to pay $20-$50/mo for a tool that saves time and reduces anxiety.
Proactive Peter
The Exhausted Caregiver
Background: Software engineer researching for his 6-year-old son with a rare genetic disorder. He manages a complex spreadsheet of doctors, symptoms, and potential trials. He is technically capable of scraping data but lacks the medical knowledge to interpret eligibility.
Top Pain Points:
- Fragmented data across 20+ tabs.
- Misses notifications when trials open/close.
- Struggles to convince skeptical doctors about trials he finds.
Goal: Efficiently filter and present viable options to his son's medical team.
Budget: Premium subscription is a non-issue; values time and accuracy over cost.
Rare-Disease Rachel
The Community Advocate
Background: Digital nomad running an online support group. She helps other patients find trials. She needs a tool that is easy to share and explain to others with lower health literacy. She values "plain language" above all else.
Top Pain Points:
- Existing tools are too clinical and cold.
- Hard to filter for "quality of life" vs. "survival" trials.
- Logistics (travel) are rarely mentioned upfront.
Goal: Empower her community with accessible, understandable options.
Budget: Price sensitive; prefers freemium model, will pay for export features.
2 "Day in the Life" Scenarios (The Problem)
Scenario 1: The Sunday Night Scramble
Who: Determined Deborah | When: Sunday, 10 PM | Context: Post-scan anxiety
Deborah sits in bed, the glow of her laptop illuminating her tired face. Her last scan showed "stable but not shrinking," and her oncologist mentioned considering clinical trials if the next round of chemo fails. She opens ClinicalTrials.gov, typing in "HER2 positive breast cancer stage 4." The screen floods with 400+ results. She clicks the first one.
The page is a wall of text. "Phase 2, Randomized, Double-Blind." She scrolls to eligibility. "Must have ECOG performance status of 0-1." She Googles "ECOG performance status," gets lost in medical definitions, and returns to the tab. She spends 45 minutes cross-referencing her own lab results (scattered on a patient portal) with the criteria. She finds three that *might* fit, but two are in states 1,000 miles away. She bookmarks them in her browser, knowing she'll likely forget to check if they close enrollment next week.
At 11:30 PM, she closes her laptop, feeling more defeated than hopeful. She hasn't found a clear answer, only a pile of PDFs and medical jargon she can't decipher. She feels like she's failing her own survival.
Scenario 2: The Logistics Dead-End
Who: Proactive Peter | When: Tuesday, Lunch Break | Context: Researching during work
Peter has 30 minutes before his next meeting. He found a promising trial for his son's condition on a hospital forum, but the link is broken. He searches the trial ID on Google and lands on a dense protocol summary. He sees the location is a major hospital 4 hours away.
He starts a mental calculation: 4 hours drive x 2 visits per month = 16 hours driving. Can he take that much time off work? Does the trial cover travel? He scans the document for "travel reimbursement" but finds nothing. He calls the number listed, but it goes to a general voicemail. He leaves a message, knowing it might take days for a callback.
He tries to cross-reference this trial with two others he found last week, opening three different tabs. He realizes one trial requires a medication his son just stopped taking. He feels the weight of the administrative burden. He's a project manager by trade, yet managing his son's healthcare feels like the most unmanageable project of his life. He clocks out for lunch, having made zero progress, feeling the familiar knot of stress tighten in his stomach.
3 User Stories (Prioritized)
| Priority | User Story | Acceptance Criteria | Effort |
|---|---|---|---|
| P0 | As a patient, I want to search for trials by condition, so that I can find options relevant to my diagnosis. | Search returns results within 2s. Results show status (Recruiting/Not). | M |
| P0 | As a patient, I want to view eligibility criteria in plain English, so that I can understand if I qualify without a medical degree. | Complex terms are highlighted with tooltip definitions. Summary grade level < 8th grade. | L |
| P0 | As a user, I want to filter by location radius, so that I don't see trials I cannot physically attend. | Map integration or "within 50 miles" toggle works accurately. | M |
| P0 | As a caregiver, I want to save trials to a list, so that I can discuss them with the doctor later. | Saved list persists after logout. Can add notes. | S |
| P1 | As a patient, I want to receive alerts for new matching trials, so that I don't have to search manually every week. | Push notification or email sent within 24h of new trial posting matching saved criteria. | M |
| P1 | As a caregiver, I want to see logistics (travel/hotels), so that I can plan the cost and time. | Integration with Google Maps for distance. Links to nearby hotels. | M |
| P1 | As a user, I want to import health records (FHIR), so that matching is automated. | Secure OAuth connection to major EHR providers (Epic, Cerner). | L |
| P2 | As a patient, I want to compare trials side-by-side, so that I can weigh pros and cons. | Select 2-3 trials and view comparison table of key metrics. | M |
| P2 | As a user, I want to export a PDF summary, so that I can bring it to my doctor. | PDF includes trial title, location, and plain-English summary. | S |
4 Job-to-be-Done Framework
Job #1: Find Hope When Standard Options Fail
"When I receive a terminal prognosis or treatment failure, I want to quickly find alternative paths forward, so that I can maintain a sense of agency and hope."
Job #2: Translate Medical Complexity into Layman's Terms
"When I encounter complex eligibility criteria, I want to understand them in plain English, so that I can self-screen accurately without calling a doctor."
5 Problem Validation Evidence
| Problem Hypothesis | Evidence Type | Source | Data Point |
|---|---|---|---|
| Patients can't find trials | Market Research | Tufts CSDD Impact Report | Only 3% of cancer patients participate in trials, often due to lack of awareness. |
| ClinicalTrials.gov UX is poor | Qualitative | App Store Reviews / Twitter | "Impossible to navigate," "Designed for researchers not patients." |
| Recruitment delays cost billions | Industry Analysis | Fortune Business Insights | Clinical trial recruitment market valued at $2.4B driven by inefficiency. |
| Caregivers carry the burden | Survey | National Alliance for Caregiving | Caregivers spend avg 20hrs/week on research and administrative tasks. |
6 User Journey Friction Points
1. Awareness
Action: Google search for "clinical trials for [condition]."
Friction: Overwhelmed by generic results and ads.
Emotion: Lost
2. Consideration
Action: Lands on ClinicalTrials.gov or competitor.
Friction: Complex filters, medical jargon immediately.
Emotion: Confused
3. Onboarding
Action: Trying to enter health details manually.
Friction: Don't know specific staging or biomarker names.
Emotion: Inadequate
4. First Use
Action: Viewing list of potential matches.
Friction: Results are irrelevant or too far away.
Emotion: Frustrated
5. Conversion
Action: Trying to contact site.
Friction: Phone numbers disconnected, no email response.
Emotion: Abandoned
7 Solution Scenarios (The After State)
Scenario 1: The Sunday Night Scramble - SOLVED
Who: Determined Deborah | Context: Post-scan anxiety
Deborah opens the Clinical Trial Navigator app on her tablet. She taps her profile ("Stage 4 HER2+"). The app refreshes and shows a notification: "2 new trials added this week match your profile." She taps the first one.
Instead of a wall of text, she sees a clean "Patient Brief" card. It highlights: "Targeted therapy for HER2+ patients who have had prior chemo." Below, the eligibility criteria are translated: "You must be in good enough health to walk and care for yourself (ECOG 0-1)." She checks her notes—she meets that.
She sees a "Logistics" tag: "50 miles away, travel stipend available." Her heart lifts. She taps "Save" and then "Share with Dr. Smith." The app generates a clean PDF summary and drafts an email to her oncologist.
She closes the tablet at 10:15 PM. She hasn't found a cure tonight, but she has a viable plan to discuss tomorrow. She feels a sense of control she hasn't felt in months.