Thirteen calls the team made in the thirty minutes after the nurse hung up, working the cohort she described against the Patient 01 page and the canvas.
- 1
Stage 1 to 3 move earlier than the Patient 01 page has them. Rachel: "the moment something feels off, whether or not it is familiar or unfamiliar, it is a jab first. That stage ends quite fast. It is not a decision point." Myo Myo asked the nurse about severity and got the same answer: "the first thing you notice, you just jab." Recognition and severity collapse into one move for her cohort.
- 2
Patient 01's wait-and-see reads as the anomaly, not the norm. Rachel's read is higher risk tolerance, resignation, "Ah, not again," and a childhood of on-demand treatment. Ariel's counter, from the HSS report: some patients do observe first and jab only if it worsens, and the reason may be the preparation, the pain and the mental load of infusing, rather than certainty about the bleed.
- 3
Decision: design for the conservative patient. Rachel: "if you cover a more conservative approach, those that are more wait and see will come under it anyway." Safe to be safe.
- 4
The real question moves from "is this a bleed" to "how severe" and "trauma or spontaneous." Both agreed severity and the trauma fork are what decide the order of screens.
- 5
Risk assessment comes first, before symptoms. A starting question such as "when was your last prophylaxis dose, which day" surfaces early: schedules differ by patient, and a missed dose raises the probability of a bleed. Rachel wants these background facts up front so the flow can scale risk.
- 6
Logging becomes an input, not only an output. If a patient already keeps a log, Patient 03's runs in Excel, pull from it rather than ask a frightened person to remember. Inertia around moving an existing system is expected; minimal fields, dose dates, means minimal personal data.
- 7
Bleed reporting is a must-have. Rachel's doubt about the nurse's rule: "how many actually report?" If the patient does not call and the nurse's own check-in misses it, the bleed goes undocumented on both sides, the pattern of repeated spontaneous bleeds is never seen, and the prophylaxis dose stays wrong. A reminder to report, plus the day-after check-in already in Gerald's design, is the feature.
- 8
The problem statement needs a post-mortem. Ariel read the current one aloud: patients and caregivers lack an accessible 24/7 self-service reference tool for symptom triage, site-specific acute bleed management and structured post-bleed recovery outside clinic hours; home care relies on memory rather than a centralised trusted resource; families face high anxiety, deferred bleed reporting and recovery management, and delayed intervention that leads to long-term joint damage. Rachel raised two open questions on it. What does "self-service" mean, and what exactly does the patient want to do for themselves? And what is the real pain outside clinic hours: "It sounds like a lot of the calls happen during work hours, and it is fine. It is managed just fine. I am starting to wonder how big really is the pain outside of clinic hours."
- 9
The "digital nurse" framing does not fit what the nurse described. Patients call her after they have infused, inside the 24-hour recovery window, asking about a second dose or whether to come in, well past the acute moment. Rachel: "They are not asking her what to do. They have done it." The journey map has the nurse contact at the wrong stage.
- 10
Ariel's hypothesis: the problem statement may carry a hidden question. "Is there a chance I do not have to infuse first, because for this specific symptom I can afford to wait?" Nobody on the call could confirm it, and HSS has said they will not spell out expectations.
- 11
Interview 03 changes focus, to pain and needs. Rachel: "We have a very good overview of process already. Now we need more flavour and need around the experience of it." The team will ask about what patients are not saying they need; Ariel adds her usual product probes, the actual problem and what is currently done that falls short.
- 12
Survey refinement waits for interview 03. Ariel restated the survey's purpose: to validate whether "information is everywhere" is a real problem, how often bleeds happen outside clinic hours, and what people actually do.
- 13
Presentation is Sunday 13 September, at the Hackers Roundtable. Per the organisers' brief: one page summarising who, what, when, where and how; a walkthrough of each chosen feature linked to a specific challenge or friction; video of the interviews as a learning journey. Patient 03's call will be recorded and screenshotted; Patient 01's was not recorded, so the photo stands in.