aurahack

HackitRx 2026 primary research

The interview files

Interviews 01 to 03, and the debrief

These files read three interviews against the team's own journey canvas, kept with the project research notes; the product it feeds is in the solution files.

Interview 01 · Patient

These files read two interviews, a patient and a haemophilia nurse, against the seven-stage journey drawn on the team's Problem Framing and Journey Canvas. Patient 01, an adult with haemophilia A, confirmed the shape of the journey and moved where its uncertainty sits. Nurse 02, a haemophilia nurse at Hospital B, brought her own rule set for the night: site and trauma first, one dose for everything, and every bleed reported back to her. The page closes with the team's own debrief straight after that call, and the prep sheet built from it for the third interview. Interview 03, with Patient 03, an Hospital B patient on factor IX, answered that prep sheet and then, asked what he wants built, described a searchable site-first reference with the don'ts, a 24-hour check-in that doubles as the report, and a recovery track that ends at the physiotherapist. Interviewees are anonymised as Patient 01, Nurse 02 and Patient 03; hospitals as Hospital A, B and C.

Seen from above, a cafe table with a phone recording between a pair of open hands and a notebook
A cafe table, a phone recording, and the first patient to check our map against his life.

Who was in the room

A validation interview. The team already had a seven-stage journey, four personas and twelve pain cards on the canvas from the first HSS conversation. The job on Sunday was to find out how much of it a real patient recognised.

The patient

An adult with haemophilia A on an extended half-life factor VIII product, no inhibitor, reviewed twice a year at Hospital A and otherwise handling episodes himself. As a child he bled around twice a month and was seen quarterly. Today he keeps a written record of his injuries and treats at home from his own stock.

The method

Three team members walked him through the canvas stage by stage, in order, asking at each one what he actually does, what he asks himself, and what he cannot resolve. The session was recorded and transcribed. Quotes on this page are his words, lightly trimmed of filler.

The limits

One experienced adult, no inhibitor, no caregiver present. Gerald's recording stopped at the lunch break; Rachel's recording covers the remaining 45 minutes, but without speaker separation, so quotes from that half are attributed by context. The clinician lane was not reached. He offered to take the unanswered questions to the rest of the patient group, and several of his answers were explicitly about himself, not all patients.

The verdict

Aligned on the shape of the journey. The uncertainty sits earlier than the canvas puts it.

The canvas centres its problem on Stage 4, the decision point: treat, monitor or go. Patient 01 does not experience a decision there. Once he is confident it is a bleed, he injects, without a monitoring branch, and he injects first even when A&E is the destination. His uncertainty lives in Stages 1 to 3, in the question "is this a bleed at all", and it spikes when the symptom is one he has never had. The dose is not a calculation for him and over-treating is not a fear. The tool he described wants is a single trusted place that consolidates bleed types and severity, with personalisation as a later stage.

6 / 7

Stages hold

Stages 4 and 5 shift; Stage 7 holds thinly.

7 / 12

Pain cards validated

2 partial, 2 contradicted, 1 untested.

3 / 4

Personas supported

Clinician lane not reached.

0

Stage zero

Prophylaxis adherence stays as context, not a stage.

The canvas, stage by stage

Each row carries the stage as drawn on the canvas, with its goal, against what Patient 01 described doing at that point. The chip is the team's call on whether the stage survives contact.

Stage 1

Trigger

Canvas goal: determine if it is a bleed

Holds

What the canvas assumes

An unusual symptom or incident starts the episode: pain, swelling, reduced mobility, an odd sensation, an injury, or a symptom with no obvious cause. The first question is "could this be a bleed?"

What Patient 01 told us

Exactly that, but with the hope written in. The first question is "could I get away with it". Most triggers for him are a sensation on waking; he then has the rest of the morning to find out.

"Could I get away with it? Like, is this sensation not the bleed that I think of?"On the first question he asks himself

Stage 2

Interpretation

Canvas goal: determine if immediate escalation is required

Holds

What the canvas assumes

The patient asks "is this a usual bleed?" and applies previous experience and known knowledge, or seeks more information.

What Patient 01 told us

He traces back: did he do anything strenuous, and on which of his target joints. He described this as probabilistic, weighing candidate causes until one feels most likely, and said it is mental, not a step towards a solution. He does not seek information at this point; he waits for external signs.

"You can't really verify until you really notice the external symptoms, the range of motion. For an ankle or knee you might see some swelling."On how a suspected bleed becomes a confirmed one

Stage 3

Severity assessment

Canvas goal: determine bleeding severity

Holds, simpler

What the canvas assumes

A graded severity assessment, with the open questions of how it differs by site and what warrants immediate escalation.

What Patient 01 told us

Two tiers: a bruise, which can wait a little, and anything internal or anything that reduces mobility, which cannot. On top sits a short site list that escalates on its own: neck, head, brain, internal organs, hip. Even for those sites he still asks whether it is a bleed first; a bump on the head is not an escalation by itself.

"If it's a bruise, then I just do a normal dosage. Anything that impacts your mobility, I will give the higher recommended dosage by the doctor."On the only severity split he uses

Stage 4

Management decision

Canvas goal: self-treat, monitor, or head to A&E

Shifts

What the canvas assumes

This is the decision point of the whole journey, a three-way fork: treat at home first, monitor first, or go to A&E because self-treatment is not feasible.

What Patient 01 told us

There is no fork once he is confident. The rule is inject immediately. Monitoring happens before confidence, in Stages 1 to 2, not as an alternative to treating. And A&E does not replace the injection: he would inject first because the ambulance takes time anyway. He flagged that this is what he believes, not a protocol he has been given.

"The general idea is, if there's a bleed, then you should inject immediately."On what happens once he is sure

Stage 5

Treatment and dosage

Canvas goal: determine treatment plan

Shifts

What the canvas assumes

The patient calculates a dose, checks home stock and reconstitutes factor, with open questions about how the plan is formed and when a second dose is needed.

What Patient 01 told us

No calculation. His doctor gave him two numbers at consultation, a prophylaxis dose and a higher bleed dose, and he picks one. He does not regard giving the higher dose to a non-bleed as a risk; surgical doses are far larger. Personalisation, for him, is already done: it is those two numbers.

"The doctor, during the consultation, they have already done the calculation for you."On why there is nothing to work out at the needle

Stage 6

Monitoring

Canvas goal: determine if the symptom is improving or requires escalation

Holds

What the canvas assumes

After treatment the patient watches for improvement; if none, escalate to A&E or re-administer after 24 hours.

What Patient 01 told us

This is where his real black box sits. He cannot know how severe the bleed was until he sees whether the dose worked. The same wait is the only way an inhibitor ever shows itself. As a child a bleed that did not respond to the injection was what got him admitted. Improvement is usually felt within one to two days, not one, and a second dose sits inside that 24-hour window rather than after it: a verbal template from a doctor or nurse tells him to redose at 24 hours, whether or not the injury is still there. He asked the team to put the 24-hour rule into the survey, because he was not confident he had it exactly right.

"The black box would be we don't know how severe the injury is. We can only perform an injection and then we have to wait and see."On the variable he has least control over

Stage 7

Post-bleed recovery

Canvas goal: determine the appropriate recovery plan

Holds, thinly

What the canvas assumes

A recovery plan follows the episode, with uncertainty about what it should contain.

What Patient 01 told us

Recovery means physiotherapy and knowing what activities to avoid, but most people never go. Professional physio has to be booked through the doctor or nurse, so a patient does not know who to book. What actually happens is one session to learn the exercises for that injury, then memory of them from then on; whether to go at all is discretionary, and he treats it as such. After the acute phase he spares the area for about a week, no heavy carrying if it is an elbow, and prophylaxis does not change while he recovers. There is no close-off protocol for an episode, only the ongoing management of the acute one.

"I think most people actually don't go through that."On post-bleed physiotherapy

The pain cards, scored

The twelve pain cards on the canvas, each scored against what one patient said. Validated means he described it unprompted or agreed when asked. Contradicted means his account runs the other way, at least for a patient like him.

ValidatedPartialContradictedUntested
Validated

High contextual ambiguity

Gum bleeds that may be nothing or may run for days into anaemia. Internal bleeds that only declare themselves as lost range of motion hours later.

Validated

No validated self-service triage

His second opinion is ChatGPT, which he expects to hallucinate. He wants the same thing from a source he trusts.

Validated

Instructions do not transfer to new sites

Black stool, blood in urine, a head bleed with no sensation to feel: his own words for where his intuition stops.

Partial

The "wait until morning" trap

He does not defer treating a confirmed bleed. But "could I get away with it" and the gum bleed he waited out are the same behaviour one stage earlier. He delays recognising, and treats the moment he has recognised.

Contradicted

Under-treatment vs over-treatment

He sees no risk in over-treating. Only delay worries him. For a patient like him the tension the card describes does not exist.

Partial

Uncertainty about the recovery plan

He is not uncertain about recovery, he is under-served by it and treats it as optional. The gap is access and habit, not information.

Untested

Handoff friction with ED staff

He was admitted as a child but did not describe the handover. Not asked.

Contradicted

Dosage uncertainty

Two prescribed numbers, no arithmetic. May still hold for inhibitor patients, caregivers of children, or anyone whose weight has changed since the last review.

Validated

Reliance on intuition without validation

He called his own method probabilistic and accumulated: "you have to have it happen, then you know what to do."

Validated

Fragmented information

His own framing of the problem: the information exists, it is just everywhere, and nobody has put it in one place.

Validated

The off-hours gap

The patient group chat has no clinicians in it. The doctor is reached by email. "Rather than the nurse, they need to sleep."

Validated

Confidence built by trial and error

Confident now, at the cost of a childhood of bleeds. He was clear that caregivers and newer patients do not get to build the same intuition.

The personas

  1. Experienced adult facing unfamiliar symptoms

    He is this persona

    Asked for his biggest remaining uncertainty after an hour of describing a confident routine, he named the unfamiliar symptom: blood in urine, black stool, something spontaneous he has never felt. That is the persona card, in his own words. The canvas has the right person; it has him worrying in the wrong stage.

  2. Less experienced or adult-acquired patient

    Supported, second hand

    He could not describe a bleed sensation to someone who has never had one, and said so. New patients depend on personality: some speak up, some keep quiet to avoid trouble. The repeat questions in the group chat come from this end of the population.

  3. Family caregiver under time pressure

    Strongly supported

    His description of a caregiver was a half-trained nurse: able to prepare and inject, do first aid and post-bleed care, but reading the bleed from outside a body they cannot feel, from advice held in memory with the nuance summarised away. Of the four personas, this is the one he thought had the least to work with.

  4. Triage nurse or ED clinician

    Not reached

    Nothing on handover, triage calls or what a clinician would need from him. The clinician interview guide on the canvas remains the route.

What else he told us

The canvas asked about stages. He answered about a life. These are the things that were not on the board and now should be.

  1. 1

    Recognition is learned, and it is learned by bleeding.

    He carries a profile of his own target joints, ankle, elbow, knee, and reads every sensation against it. He called the process a Markov chain: gather evidence, raise the probability of the likeliest cause, act on it. It took a childhood of episodes to build. Caregivers never build it because they are on the outside of the body.

    "It's accumulated knowledge. It's like you have to have it happen, then you know what to do."

    So what: the app's job for an adult like him is small; for a caregiver it is the whole intuition he has and they do not.

  2. 2

    The clock runs in hours, and it starts on waking.

    His typical trigger is a sensation when he wakes at nine or ten. If it is a joint, by the afternoon the range of motion is gone and the question has answered itself. The longer it is left, the worse it gets, so the useful window is half a day, not a night.

    "Usually by afternoon, if you're waking up at maybe 9 or 10am, you will know it's a bleed already."

    So what: the 2am framing is right for caregivers of children; for this patient the episode is a morning one, and the re-check timer should think in hours.

  3. 3

    The needle is cheap, so the only cost is delay.

    He does not weigh over-treatment. A dose given to a non-bleed just raises factor levels for a while; surgery uses far more. So the whole of his decision effort goes into shortening the time to "yes, it is a bleed", never into avoiding an unnecessary injection.

    "I wouldn't say it's a risk, because it's just increasing the levels to a degree."

    So what: copy that warns about over-treating is solving a problem he does not have. Copy that shortens recognition is the product.

  4. 4

    Inject first, then call the ambulance.

    Asked whether he would inject before going to A&E, he said yes, because the ambulance takes time anyway. Asked whether that is a universal protocol, he said he did not have the answer but would think so. It is a belief, held firmly, unconfirmed by a clinician.

    "It would be best to inject first, because you have to wait for A&E anyway."

    So what: this needs a haematologist's confirmation before it appears on any A&E-lane card. If confirmed, it belongs on the first one.

  5. 5

    The unfamiliar symptom is the real black box.

    Gum bleeds that drag on for days until he felt lightheaded. Black stool from swallowed blood. Blood in urine. A head where the brain has no sensation, so he would only know from vision or consciousness. These are the cases where his system stops and, by his own account, most patients and caregivers have no system at all.

    "Suddenly you got black stool, or whatever. Where can it come from? That's the worst part."

    So what: the non-joint cards, GI, renal, head, oral, are the highest-value content in the app, and the ones no generic leaflet gives a patient in the moment.

  6. 6

    Help means a second pair of hands before it means a hospital.

    His low-severity call for help is physical: a bad elbow bleed leaves him with one working hand, and reconstituting factor is a two-handed job. His high-severity threshold is when he cannot move or is not fully aware. Between those, he expects to manage.

    "If it's a bad elbow bleed, then I will be stuck with just one healthy hand. That will be hard for me to prepare something."

    So what: one-handed use is a literal requirement, and "who can help you prepare it" is a real question for the setup flow.

  7. 7

    The care team is an email address and a friend's nurse.

    He sees his doctor twice a year and otherwise writes email, saving every question for one message because he assumes the doctor is under pressure. The informal, back-and-forth nurse relationship he described belongs to a friend at a different hospital, not to him. The patient group chat has patients and caregivers only, and its questions repeat, mostly from parents of young children.

    "When I reach out to the doctor, I have to cover everything. You will just unload all the questions you want to ask at one call."

    So what: between reviews there is no clinical channel with a same-day answer. The repeat questions in the group chat are a ready-made content list; he offered to bring the team's questions there.

  8. 8

    He already uses an AI, and already distrusts it.

    For something unfamiliar he types the symptoms into ChatGPT, withholding his identity and giving as little as he can, and treats the answer as a second opinion. He expects hallucination. He would still follow a "give a dose, wait, then go" answer as a precaution. What would make him trust a tool instead is a curated source with an authority behind it: his first answer was the government, then a named clinical institution.

    "Currently we are not recommended to take it at face value from these chatbots. They may hallucinate. Curated information, from a trusted source: these are the two values."

    So what: the source stamp on every card is the reason he would open this instead of a chatbot. Never ask for more identity than the card needs.

  9. 9

    He logs injuries. He does not log knocks.

    He keeps a record of every injury, and said so with some pride. Asked whether he would log a head bump that felt fine, in case it turned into dizziness two hours later, the answer was that he is not that hardworking. The record is of confirmed events, never of suspicions.

    "I do record what injury I have. Not that hardworking, though."

    So what: the bleed log will be filled after the fact, from confirmed episodes. A "note a knock" feature will not be used unless it costs one tap and asks nothing.

  10. 10

    Consolidate first. Personalise later.

    Asked what a good outcome would look like, his answer was the scattered information on bleed types and severity in one place, from which he can make his own interpretation. A triage engine did not come up. He agreed that a version tuned to his own profile would be better, and placed it as a later stage; a compact, curated reference would already be a big step.

    "A lot of information is everywhere. It's there, just that it's everywhere. Is there something that can help the patient consolidate all this important information at one place?"

    So what: version zero is a trusted, well-organised reference with the patient's two doses on top. A decision engine can wait, and a reference is also a far easier thing to get a clinician to sign.

  11. 11

    Cost shaped the past, and independence shapes the present.

    As a child he was treated on demand, after a bleed rather than to prevent one, because of cost, which he knows is not the recommendation. Regular prophylaxis and less cost pressure came later. He linked adult self-management to independence as much as to experience: an adult takes charge of his own condition, and a child's parents admit him to hospital when the injection does not seem to work.

    "That is actually not the recommendation, but that is the circumstances due to the cost."

    So what: the adult and the parent are different products wearing one app. The parent's threshold for hospital is lower and their tolerance for waiting is shorter.

  12. 12

    The extended half-life product cut his bleeds by more than half.

    A year on an extended half-life factor VIII product took him from 12 to 18 bleeds a year down to under six, provided he keeps to the prophylaxis schedule.

    "Provided we adhere to the prophylaxis."

    So what: the extended half-life product cut his bleeds, so frequency questions must ask about the last 12 months.

  13. 13

    Adherence has a cost, and it is not oral medication.

    He does not always keep to the prophylaxis schedule, and said why. Preparation, timetable and scheduling are a real factor, both mental and physical, and sometimes he does not want to do it. Preparation and the injection together take half an hour to an hour.

    "It's not like oral medication, you don't just pop the pills... preparation, timetable, scheduling, all that is a big factor."

    So what: the needle costs half an hour to an hour, so the home card should name that cost rather than assume treating is free.

  14. 14

    He named his own risk appetite, and called it generational.

    Being young and on prophylaxis makes him "somewhat of a regular person," against an older, on-demand cohort with permanent damage to their joints. He was blunt about where that confidence can lead.

    "It's like a gambling addiction. One more, one more try. But it's ultimately very detrimental to the body."

    So what: risk appetite is generational, so design for the conservative patient; the gambler still lands inside it.

  15. 15

    The survey traces back to his own suggestion.

    Asked for an input sheet on the variables in his decision-making, he said not to take his own account as representative, and suggested the team circulate a ranking survey in the group chat instead. The survey the team built traces to this exchange.

    "Don't take my one as representative."

    So what: the survey came from him, so he is the first distribution channel.

  16. 16

    He doubts anyone answers a questionnaire mid-bleed.

    Asked whether a patient in the middle of an acute episode would have the mind space for a short questionnaire, his answer was no, with a hint that there is a more intuitive way to ask than a list of questions. He was blunt about how content gets read at all.

    "Would you have that mind space and patience to go through a short questionnaire? ... I look at title, I never read."

    So what: no questionnaire at 2am; the first screen is a tap on a body, and titles must carry the meaning because he does not read past them.

What this changes in the build

One interview does not rewrite a product. It does move the emphasis. From what Patient 01 said, the app should:

  • Open on "is this a bleed?", not "what should I do?" The first screens do recognition work: site, sensation, what changed, visible signs. The decision comes for free once recognition is done.
  • Show the two prescribed doses and stop there. No calculator in the night flow. The profile holds the usual dose and the upper dose as written by the centre, and the card repeats them.
  • Drop over-treatment from the copy. The risk language is about delay. "If in doubt, treat" is the sentence he already lives by.
  • Put the unfamiliar sites at the front of the content plan. GI, renal, head, mouth and throat, with the signs that mean go now, written for someone who has never had one.
  • Write the caregiver mode for someone who cannot feel it. Questions about what they can see and measure: swelling, range of motion, whether the person can bear weight, whether they are screaming, whether they are fully aware.
  • Make one-handed use literal. Every tap in the night flow reachable with the wrong hand on a stiff elbow.
  • Stamp the source on every card. The centre's name and the guideline behind the card, visible without a tap. It is the whole difference between this and a chatbot.
  • Ask for nothing that identifies him. He withholds his identity from ChatGPT by instinct. The profile should need a product, two doses, an inhibitor answer and a centre, and no more.
  • Hold "inject first, then A&E" until a clinician confirms it. Then put it on the first A&E-lane card.
  • Give the redose window a floor and a ceiling. He redoses inside 24 hours by a verbal template; the nurse checks at 24 hours by pain score; WFH scores at 8 hours. The check-in must say which clock it is using.
Interview 02 · Nurse

Who was in the room

A second validation call, this time with the clinician side of the journey: a haemophilia nurse who sees the same kind of patient Patient 01 is, from the other end of the phone.

The nurse

Nurse 02, haemophilia nurse at Hospital B. She sees mostly severe adult patients on prophylaxis, plus mild and moderate patients around planned surgery or when they need factor. Products at Hospital B include one extended half-life factor VIII, standard half-life factor IX, and two or three patients on emicizumab who still top up with factor VIII for a bleed. Her patients are congenital, adult, and call her themselves; caregivers almost never do. Paediatric and acquired haemophilia patients are not her cohort.

The method

A seven-section nurse guide drawn up on the team's Miro board, run over a video call of about 50 minutes on 7 September 2026, with four team members on the call: Myo Myo leading, with Ariel, Rachel and Gerald.

The limits

One nurse, one centre. Her practice covers severe adults on prophylaxis; mild, moderate and paediatric practice were not covered. A haematologist has not yet been interviewed.

The verdict

Site and trauma first, one dose for everything, and the only question left is how many days.

Her rule set is site and trauma first: is it a joint or not, was there a fall. The dose is not a decision, it is the prophylaxis dose everyone already has at home; what varies is only the number of days. The only question she says patients actually need answered remotely is how many more days of treatment. For her cohort, recognising a bleed is already solved.

1 dose

The prophylaxis dose

What varies is the number of days, not the amount.

24 h

The crucial check

Re-check next morning against pain score.

0

Written plans for patients

No checklist or pamphlet exists at Hospital B.

3x

"Report every bleed"

Said three times, unprompted, closing the call.

The nurse guide, section by section

Each row carries what the team's seven-section nurse guide asked, against what Nurse 02 said in response. The chip marks whether the section's questions were fully put to her.

Section 1

Patient profiles

Guide asked: who calls her, and how a novice differs from an experienced self-manager

Partly answered

What the guide asked

Who her patients are, and whether a novice self-manager behaves differently from an experienced one on the phone.

What she said

Most calls are severe adults on prophylaxis; caregivers almost never call her. The novice-versus-experienced contrast was not reached directly. The one group she named who genuinely cannot tell is older patients with knee arthritis, who give themselves factor and the pain does not go.

"Most of them know how to manage the bleed. Most of them."On her patients' own competence

Section 2

Clinical guidelines and resources

Guide asked: what guidelines and written resources exist for patients

Answered

What the guide asked

Which guidelines she follows, and what written resources, checklists or apps she gives patients.

What she said

She follows the World Federation of Hemophilia guideline table by bleed site, with day ranges from three to five days up to seven to eight. No written acute-bleed plan, checklist or pamphlet exists for patients, because every bleed is different; patients work from RICE. Care is multidisciplinary, but for an acute bleed she is the first point of contact and, in practice, the whole loop.

"We did not pull out a set of guideline or checklist for the patient."On why there is no patient-facing plan

Section 3

Patient experience

Guide asked: when and how patients reach her, and what they ask

Answered

What the guide asked

The channel and timing patients use to reach her, and the questions that repeat.

What she said

Patients call on the second or third day, once factor is running low, the pain is not improving, or they need medical leave, by call or text, office hours only. The repeated questions are whether another dose is needed, how many more days of tranexamic acid, and, for older patients, whether the pain is a bleed or arthritis. She does not reply after hours by her own practice; anything urgent goes to accident and emergency.

"If it's really urgent, I cannot do anything also. I cannot see your bleed. Even you text me, I cannot help you."On why she does not answer after hours

Section 4

Understanding acute bleeds

Guide asked: where bleeds happen and what changes the urgency

Answered

What the guide asked

Common bleed sites and causes, and what raises or lowers the urgency of a bleed.

What she said

Most bleeds are in target joints: elbow, knee, ankle, sometimes shoulder. Muscle bleeds follow strenuous activity or gym sessions on trough days. Her first fork is spontaneous versus trauma, ahead of site: spontaneous means dose, rest, tranexamic acid, and report at the next office hour; trauma with a fall means dose, then accident and emergency even off hours, for an X-ray to exclude a fracture. Given early, factor keeps the consequences from becoming serious, with intracranial bleeds the one exception that comes in immediately.

"The important is how soon the factor is administered."On what decides the outcome

Section 5

Remote triage and decision thresholds

Guide asked: how she triages by phone, and what a tool must never decide alone

Partly answered

What the guide asked

Her remote triage rules, and the boundary of what a tool should never be allowed to decide.

What she said

Her opening rule for anyone with factor at home is to give one dose the moment a bleed is felt, in doubt or not, then go to accident and emergency if unsure. Any trauma, or a site that is not a joint, goes straight there after the dose. The dose itself does not vary; the number of days does, from two to three for a small joint to five to seven for a big one, tailored to pain score and whether the patient must walk or work on it. What a tool must never decide alone was not answered directly; the days-of-dosing call rests on her reading of the patient's report, and physio intensity rests on a physiotherapist.

"In the benefit of doubt, always give yourself one dose first. Then you head down to the A&E if you are not sure."On the rule she opens with

Section 6

Monitoring and post-bleed recovery

Guide asked: how recovery is tracked and when prophylaxis resumes

Answered

What the guide asked

What she checks after the first dose, and how the return to normal prophylaxis works.

What she said

The crucial check is the next morning against pain score; better means continue the doses she has set, worse means call. No relief after the first dose usually means it is not a bleed, or rarely an inhibitor, and either way the patient should come back. Prophylaxis never stops; a bleed on an off day is simply added alongside the regular schedule. Physio after every bleed is the ideal that never happens in practice, because intensity needs a physiotherapist's assessment a patient cannot safely make.

"The crucial is the 24 hours."On the one number that decides the next step

Section 7

Solution co-design

Guide asked: where a tool can and cannot help

Answered

What the guide asked

Her own design for what a bleed-triage tool should and should not do.

What she said

She described a checklist: give yourself factor first, then ask trauma or spontaneous, then site; anything that is not a joint means dose, then accident and emergency. Her closing line, said three times, is that all bleeds must be reported to the healthcare provider, because a spontaneous bleed on effective prophylaxis is itself a signal that dosing or activity needs to change.

"All bleeds must be reported to the healthcare providers."Said three times, closing the call

Against Patient 01

The same nine points, read once through a patient without an inhibitor and once through a nurse whose cohort is severe adults on prophylaxis.

Patient 01 saidThe nurse
Inject first, then A&E (his belief, unconfirmed)Confirmed as the rule she teaches, for trauma and for every non-joint site
Two prescribed doses, no calculationHospital B patients have one dose, the prophylaxis dose; what varies is how many days. Both are no calculation at the needle
Over-treating is not a fear"In the benefit of doubt, always give yourself one dose first"
Uncertainty lives in "is it a bleed"For her cohort it lives in how many more doses, and how many days of tranexamic acid
Unfamiliar sites are the black boxHer answer: not a joint, dose, then A&E to find the source. No middle rung
Two-tier severity plus a site listShe does not grade severity remotely at all; site and trauma decide
Physio rarely happens, a week sparing the joint, prophylaxis unchangedPhysio ideal and never happens, rest one to two weeks, prophylaxis never stops. The two accounts agree
Care team is an email addressNurse is the whole loop, office hours, and does not reply after hours by design
He logs injuries with prideShe wants every bleed reported to her, because a spontaneous bleed is a dosing signal

The question from the call

Gerald's question on the call: "According to Nurse 02, patients generally know it is a bleed, so does our solution still need to help identify bleeds?"

For her cohort, severe adults at Hospital B with years of practice, recognition is mostly solved, and the questions that reach her are downstream: how many more doses, how many days of tranexamic acid, whether it is arthritis. That matches Patient 01 almost exactly, so a shorter version of the flow should open on site, lane and the number of doses rather than on recognition. Recognition is still the product for three groups: the elderly patient with arthritis in the same joint, a patient with a symptom at a site they have never bled at, and a newer self-manager the Hospital B cohort does not contain. Her rule to give one dose first if in doubt is the recognition rule for everyone else, and it belongs on the first screen.

What this changes in the build

  1. 1

    Inject first is now confirmed. The nurse teaches injecting before A&E for trauma and every non-joint site. Keep the haematologist question open for edge cases, but the cards can stop calling it unconfirmed.

  2. 2

    Add a trauma question to the night spine. NGT-06 asks when, NGT-07 asks whether it is familiar; neither asks whether there was a fall or a knock, and a trauma fall routes to A&E after the dose even at a target joint.

  3. 3

    Report every bleed. The receipt back to the nurse (OUT-09) moves from a nice loop to the nurse's own rule: make telling the haemophilia nurse on the next working day the last step on every home card.

  4. 4

    Carry a days-of-treatment question, not a severity one. The day two and three check-ins (OUT-13 series) should ask how many more days of factor and tranexamic acid, answered by the nurse in office hours, using the pain score before and after the first dose.

  5. 5

    No second-dose path. If the first dose brings no relief, the nurse's reading is that it is probably not a bleed, or rarely an inhibitor, and the patient should come back; OUT-13b and JNT-17 stay as written.

  6. 6

    Add infection to the urine lane. URN-03 should add a GP visit to rule out infection as the next-day step; URN-04, no tranexamic acid, stands unchanged.

  7. 7

    Let the bleed dose default to "same as usual". Hospital B patients carry one prophylaxis dose, so profile doses can offer a single number rather than a calculation. Correction from interview 03: Hospital B is not uniformly one number; Patient 03, an Hospital B patient, carries two. Soften to one or two numbers, set by the centre.

  8. 8

    Point recovery at a physio appointment, not exercises. OUT-12 should reflect that prophylaxis resumes on its fixed days and never stops, that the gym is off for one to two weeks, and that physio intensity is a physiotherapist's call the card should prompt for, not describe.

  9. 9

    Add three library entries. Gym sessions on trough days cause muscle bleeds, gum bleeds after dental scaling respond to tranexamic acid, and kidney stones are a common cause of blood in the urine at Hospital B; the nurse gives all three verbally today with nothing written down.

  10. 10

    Update the persona ledger. The adult patient is now validated twice, by Patient 01 and by the nurse's cohort; caregivers remain unvalidated, since her adult patients rarely have one call for them; acquired haemophilia stays out of scope, by disease rather than by choice.

Persona ledger

  1. Adult patient: validated twice, by Patient 01 and by the nurse's cohort.
  2. Caregivers: still unvalidated; her adult cohort gave no caregiver signal.
  3. Acquired haemophilia: stays out of scope, by disease rather than by choice.
Team debrief · 7 Sep

What happened

The team debriefed for about thirty minutes straight after the call with Nurse 02, on 7 September 2026. Rachel led the analysis, Ariel facilitated and owns the problem statement and the next interview, and Myo Myo and Gerald were both on the call. The debrief assumed the Patient 01 call was not recorded; both Gerald's and Rachel's recordings exist, and Rachel's covers the lunch segment, which matters for the Roundtable video.

What the team concluded

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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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.

Decisions

  1. Design for the conservative patient: safe to be safe, and the more wait-and-see patients come under it anyway.
  2. Bleed reporting is a must-have: on the strength of the nurse's own rule, said three times on her own call.
  3. Survey refinement waits: interview 03 clarifies the problem first, the survey follows after.
  4. Record interview 03 and screenshot it: the Patient 01 photo stood in once because his call was not recorded; it should not have to again.

Where the debrief and these files disagree

Interview 01's text above stays as written. The debrief's reading sits here, beside it, for the reader to weigh: the Patient 01 page places the uncertainty in "is this a bleed", and the debrief finds that stage barely exists for the conservative patient. Both can be true. The nurse's cohort has infuse-on-suspicion trained in; Patient 01 has not. The survey's two situations, q15 and q16, are the test, and the debrief itself deferred the survey.

"How big is the pain outside clinic hours" is a challenge to the whole PS2 premise. These files already hold the pieces: the nurse confirmed there is no after-hours channel by design, half of last year's bleeds in the HSS study ended in hospital, and Patient 01's episodes start on waking. The honest reframe locates the off-hours pain in the 24 hours after the dose: how many more days of treatment, whether it is working, whether to report it, more than a single night-time panic. That is where the nurse's calls land, and where the app's day-2 check-ins already sit.

The team's "risk assessment first" and the build's "red flags first, then body map" are compatible if the risk facts, last prophylaxis dose, trauma or not, are asked in setup or in the first two screens rather than as a quiz in the middle of the night. Rachel's point about memory under stress argues for setup, not the night.

Prep sheet for interview 03

Interview 03: Patient 03, Wednesday 9 September. Focus is pain and needs over process; he is the meticulous self-logger, his log runs in Excel, so he is also the test case for logging as an input. Answered on 9 September; the answers are read row by row in interview 03 below.

From the debrief

  1. 1

    Walk us through your Excel: what columns, when you fill it in, what you have ever looked back at.

  2. 2

    The last time something felt off, what did you do in the first ten minutes, and why that?

  3. 3

    Have you ever waited rather than infused? What were you weighing?

  4. 4

    After a bleed, do you tell the nurse? Every time? What decides whether you call?

  5. 5

    Outside clinic hours specifically: what is the worst part? Is it the decision, the needle, being alone with it, or the morning after?

  6. 6

    When you say you want to self-serve, what would you want to do without a clinician?

  7. 7

    What did your doctor tell you at the last review that you can no longer remember exactly?

  8. 8

    Is there any symptom for which you would want permission to wait?

Carried over from these files

  1. 1

    Stage 7 recovery: what you do the week after, whether prophylaxis resumed on schedule, whether anyone mentioned physio.

  2. 2

    The 24-hour check: how you judge it worked, and what you did the one time it did not.

  3. 3

    Dose: one number or two, and who set them.

  4. 4

    Trust: what would make you open a card at night instead of the group chat or ChatGPT.

Rules for the room: record the call, take a screenshot, bridge new answers with "from Nurse 02 we heard X, does that match you", and do not ask what solution he wants.

Interview 03 · Patient

Who was in the room

A third interview, this time a video call, with an Hospital B patient on a different factor product and a different dosing rule than Patient 01, at the one centre of the three studied that has a dedicated haemophilia nurse. In the last twenty minutes, at his own request, he stopped answering the prep sheet and started describing a product.

The patient

Patient 03, an adult with haemophilia B, treated with factor IX at Hospital B. Weekly high-dose prophylaxis on Sundays, with two fixed doses set by his care team: nine for prophylaxis, twelve for a bleed. His target joints are the right elbow and right ankle, with breakthrough bleeds once or twice a year. He has kept his own Excel log for years, tracking inventory, dose per day, and bleed site and amount.

The method

A video call on Wednesday 9 September 2026, running about 81 minutes. Ariel led the experience half of the guide; a second teammate led the problem-statement and solution half; Gerald closed with the questions on what he wants built. The session was run against the prep sheet built the day before, above.

The limits

One experienced factor IX patient, at the one centre of the three studied that has a nurse. The recording starts a few minutes into the call, so the opening framing is missing. A second teammate, and briefly a third, are unattributed by the recorder. He was asked what he wants built, at his own request, so the last twenty minutes are a stakeholder brief, not observation.

The verdict

Factor first is settled. The product he described starts after the dose and ends at the physiotherapist.

He confirmed factor first without hesitation, even before A&E, and confirmed it for a second product and a second centre. What is unresolved is everything after: what to do once the first dose is in, and how a joint gets back to baseline afterwards. Asked directly what he wants built, he described a searchable site-first reference with the don'ts on the face of it, a 24-hour check-in that doubles as the report to his nurse, and a recovery track that runs past the acute dose and ends at the physiotherapist.

2 doses

Fixed numbers, no calculation

Nine for prophylaxis, twelve for a bleed, set by his care team.

1

Off-hours bleed in the past year

Handled alone, in a car in Malaysia.

2 months

Bleed to physio

The grey zone where range of motion was lost.

0

Target-joint bleeds reported

He tells the nurse about unusual sites only.

The prep sheet, answered

The twelve prep questions built after the nurse call, put to Patient 03 row by row. The chip is the team's read on how fully each one landed.

Debrief 1

Walk us through your Excel

Asked: what columns, when you fill it in, what you have ever looked back at

Answered

What we asked

Walk us through your Excel: what columns, when you fill it in, what you have ever looked back at.

What he said

One all-in-one sheet, kept for years: inventory management, dose per day, and for a bleed the site and amount used. His own template, not the hospital's. Weekly prophylaxis needs no reminder; the sheet's job is telling him when stock is low enough to order. Not asked what he has ever looked back at.

"Already in my head, every Sunday."On why the sheet isn't for remembering the schedule

Debrief 2

First ten minutes, and why

Asked: the last time something felt off, what did you do first and why

Answered

What we asked

The last time something felt off, what did you do in the first ten minutes, and why that?

What he said

Target joint: he knew the bleed was coming, and infused as soon as he reached a place to do it. Blood in urine: factor first, same dose as a target joint, hydrate, monitor. No emotion at the moment.

"It's more like, do I, is this most likely a bleed or not ... I'm kind of numb ... it's a bit autopilot for me."On what he feels in the first ten minutes

Debrief 3

Ever waited rather than infused

Asked: have you ever waited rather than infused, and what were you weighing

Answered

What we asked

Have you ever waited rather than infused? What were you weighing?

What he said

Yes, at night. He also waits on ambiguous muscle sensations, cold compress first, and infuses only once the probability tips. He named the cost himself: asleep and immobile, he cannot react for six or seven hours instead of two.

"If it's late in the middle of the night, I wait until the morning, because it's very inconvenient and I think I'm not in the right state of mind to give an IV infusion, although technically I should."On why he waits till morning

Debrief 4

Do you tell the nurse, every time

Asked: after a bleed, do you tell the nurse, every time, what decides whether you call

Answered

What we asked

After a bleed, do you tell the nurse? Every time? What decides whether you call?

What he said

"No. I don't." Target joints are managed alone; he contacts her for unusual sites only. Hospital B asks for a monthly log, submitted when he remembers, and nobody chases it.

"If we report a bleed, then we just manage on our own, then there's nothing that they can do."On why reporting doesn't change what happens next

Debrief 5

Off hours: the worst part

Asked: is it the decision, the needle, being alone, or the morning after

Answered, reframed

What we asked

Outside clinic hours specifically: what is the worst part? Is it the decision, the needle, being alone with it, or the morning after?

What he said

Not the decision, and not the needle as such. Two things: no one to ask "then what next" after the first dose, and the night infusion itself, done groggy. The blood-in-urine night frightened him only for the colour.

"There was no pain, no symptoms ... I just treated it like a bleed."On the one frightening night, and why it wasn't so frightening

Debrief 6

What he'd want without a clinician

Asked: what would you want to do without a clinician

Answered

What we asked

When you say you want to self-serve, what would you want to do without a clinician?

What he said

Look up the site and get the rule and the don'ts, manage the night on that plus his own experience, then contact the nurse on the next working day. He does not want the tool to decide for him.

"I would just search for it. Then it comes up something like, do not use tranexamic acid, right there."On what he wants instead of a clinician

Debrief 7

What he can no longer remember

Asked: what did your doctor say that you can no longer remember

Partly answered

What we asked

What did your doctor tell you at the last review that you can no longer remember exactly?

What he said

"Sometimes I forget," and the fix is messaging Nurse 02, which happens often. He could not recall who taught him the three A&E triggers, only that it was the nurse or the doctor. No specific forgotten instruction was named.

"Just to double-check that we're doing things correctly."On why he messages Nurse 02

Debrief 8

Permission to wait on a symptom

Asked: any symptom you would want permission to wait on

Answered, indirectly

What we asked

Is there any symptom for which you would want permission to wait?

What he said

Muscle sensations after exertion. With no trigger, he leans towards spontaneous bleed instead. For the urine he gave himself permission to use the lower dose and skip A&E because there was no pain; the nurse later confirmed the lower dose.

"I'm more inclined to think it might be muscle ache."On what tips a muscle ache toward a bleed

Carried 1

Stage 7: the week after

Asked: prophylaxis, physio, and the week after a bleed

Answered

What we asked

Stage 7 recovery: what you do the week after, whether prophylaxis resumed on schedule, whether anyone mentioned physio.

What he said

Cautious, shifts weight-bearing, plays by ear, and resumes exercise late. Prophylaxis untouched. His ankle's physio session was two months away; nothing for the elbow.

"We often don't think about the optimal recovery."On the week after a bleed

Carried 2

The 24-hour check

Asked: how you judge it worked, and what you did the one time it did not

Partly answered

What we asked

The 24-hour check: how you judge it worked, and what you did the one time it did not.

What he said

No pain score, no fixed clock. The one time it did not work was not covered; he says he has never had a bleed he could not settle at home apart from the open wound.

"I just monitor. If it's not getting better, and if it's actually getting worse, then I'll give another dose."On how he judges the 24 hours

Carried 3

Dose: one number or two

Asked: one number or two, and who set them

Answered

What we asked

Dose: one number or two, and who set them.

What he said

Two, set by the nurse and doctor: nine and twelve. For the urine the nurse told him nine was enough. Factor VIII dosing differs by half-life; he can only speak for factor 9.

"We kind of work around certain fixed doses."On the two numbers

Carried 4

Trust: card vs group chat

Asked: what makes you open a card instead of the group chat

Answered, in his own framing

What we asked

Trust: what would make you open a card at night instead of the group chat or ChatGPT.

What he said

A card is trusted if it is the WFH guidance made findable, locally validated by Nurse 02 or the haematologist. He raised local validation himself and offered to bring the nurse in to trial the workflows.

"A bit subjective ... the advice that we give may not be suitable for this patient's context."On why the group chat isn't enough

The seven stages through Patient 03

The same canvas, run against a second patient with a different product and a different centre.

StageWhat he doesVerdict
1. TriggerTarget joint: he knows before it shows. Unfamiliar site: "you wake up and the toilet bowl is red."Holds
2. InterpretationJoint bleeds are easy to diagnose. Muscle sensations are correlated with activity, cold-compressed, and weighed until the probability tips, the nurse's trauma-or-spontaneous fork built in.Holds
3. SeverityCopy-paste from the target joint unless a red line is crossed: open wound, head injury or concussion, trauma to the torso. Urine colour is his own severity gauge.Holds, thinner than Patient 01's two-tier list
4. Management decisionFactor first, always, even before A&E, because the nurse and haematologist are at Hospital B; an ambulance goes to the nearest hospital, and only Hospital A, Hospital B and Hospital C have haemophilia care.Holds; the centre-choice rule is new
5. Treatment and dosageTwo fixed numbers, no calculation. Twelve for joints; the nurse dropped him to nine for the urine. Night delay is the failure mode, not the arithmetic.Holds
6. Monitoring"Factor first, but then what next": another dose, go down for evaluation, or which medicines to avoid. He monitors by feel, redoses if worse, calls the nurse next working day for unusual sites only.Shifts, the uncertainty sits after the first dose
7. Post-bleed recoveryHis strongest material, "the grey zone": a two-month gap to physio, no idea how to scale exercise down and back up, cautious enough to lose range of motion in the elbow.Holds, thinly, and is where he'd move the product

Against Patient 01 and the nurse

The same points, now read through three accounts: a patient on factor VIII at Hospital A, a nurse's cohort at Hospital B, and a second patient, on factor IX, at Hospital B itself.

PointPatient 01Nurse 02Patient 03
First moveCould I get away with it; wait and watch through the dayOne dose at the first sensation, benefit of the doubtFactor as soon as he can, for a target joint; probability call for muscles; waits till morning at night
DoseTwo numbers, no calculationOne number, days varyTwo numbers, no calculation, nurse can drop it to the lower one
Unfamiliar siteThe black boxDose, then A&E to find the sourceCopy-paste the target-joint protocol, call the nurse next day, A&E only for the three red lines
Red lines to A&ENeck, head, brain, organs, hipAny trauma, any non-joint siteOpen wound, head injury, torso trauma
Which A&ENot discussedNot discussedHospital B, never the nearest; only three hospitals have haemophilia care
ReportingLogs injuries with pride, tells no oneEvery bleed must be reportedOwn Excel log; Hospital B monthly log submitted when he remembers; nurse told about unusual sites only
After hoursGroup chat, ChatGPTNothing by design; A&E if urgentNothing; manage on experience, nurse next working day
RecoveryA week sparing the joint, physio rarelyPhysio ideal and never happensTwo months to physio, lost range of motion, "the grey zone"
Care teamAn email addressThe nurse is the whole loopThe nurse is the single point of contact and the bottleneck; wants physio and doctors on the platform
CaregiversA half-trained nurseAlmost never call herParents of young children are a different population with their own set of needs
StyleWait and seeConservative"Our styles are very different ... each of us manage our conditions very differently"

What he wants built

Asked directly, in the last twenty minutes and at his own request, he laid out a product. Quotes below are his.

  1. 1

    The problem is a single point of contact. "A lot of our queries go through one single point of contact, which is the haemophilia nurse ... only available on office hours on weekdays. Public holidays and weekends, we don't have access." Cover nurses when she is on leave "may not be as experienced". Hospital A has no nurse at all.

  2. 2

    The gap is the middle ground. "Right now we are just using what works for our target joints and applying it to scenarios where we are not familiar with. The alternative is go straight to emergency department. So there is not really a middle ground that we can refer to before we go A&E or wait for the next working day."

  3. 3

    The shape is a searchable site-first reference, with the don'ts. "If I know where the bleed is, I would just search up that particular site ... blood in the urine, I would just search for it. Then it comes up something like, do not use tranexamic acid, right there. That's a very clear don't." Not prompted, not diagnosed: searched. "The WFH guidelines are buried in a 100-plus-page PDF. Most of us will not be able to find what we need there."

  4. 4

    It is a first gate, not a replacement. "If it's off-hours, we can just refer to it. Then, based on our own experience, we'll just manage it. And ideally the scenario should be that we should be contacting the nurses."

  5. 5

    The second half of the product is recovery. "We are very focused on treating the bleed. But is the way we are managing optimal in terms of recovery? Every bleed inherently creates some damage ... if we bleed enough times, how do we get it back to baseline?" And on the joint: "when you have a bleed at a specific spot, it tends to bleed more frequently because that part is already weakened."

  6. 6

    Bring the care team onto the same platform. "Whether we can get the haemophilia care team on board this solution such that they can also track the progress of the bleed and the recovery phase, instead of them needing to proactively contact us or we need to proactively tell them." Prompts: "24 hours past your infusion, report your progress, worsening, better, or whatever." And back the other way: "the team can prompt us, we think you should come down for a physiotherapy assessment. Otherwise we'll just manage it on our own." Only in office hours: "they should only be using this after they come back to work."

  7. 7

    Bring the physiotherapist and the doctor in, not only the nurse. "The haemophilia care team is a multidisciplinary team ... the physiotherapist will be one that I can think of because there is a gap there. The doctors also, possibly." He will ask Nurse 02, back next week, which physiotherapist would take part. Doctors are "very hard to get hold of".

  8. 8

    Outcomes, in HSS's words. "The ultimate long-term aim is to reduce the long-term joint or muscle damage." Every bleed reviewed by the care team one way or another, and recovery optimised so the same spot does not bleed again. And: "reduce the anxiety whenever you're met with a bleeding episode, especially for caregivers of the children or the youth." He warns off the obvious metric: "reducing bleeds is quite tricky ... if you are trying to use a digital tool to reduce bleeds, I cannot find a direct correlation."

  9. 9

    Where the line is. He put the nurse's question back to the team: "where does the line need to be drawn ... you cannot have a fully self-help tool because each person may be different ... if you have a severe bleed, you may not be able to fully use that self-help advice." The team's answer on the call: no diagnosis, a support tool with validated content, the decision stays with the human. He agreed and offered Nurse 02 for a trial run, "because the World Federation guidelines are meant to be broad."

  10. 10

    Two populations he wants remembered. Mild patients on demand, not on prophylaxis, whose recommendation differs and who, if they cannot infuse, go straight to A&E. And parents of young children: "they are the ones managing everything ... deciding, if the child reports I'm feeling weird, should I give factor or not ... from another person's perspective, they may interpret it differently." Phase-by-phase is fine by him; teens starting self-infusion can use the adult content; "most kids will grow up to become adults anyway."

Read as a spec, that is: a site-first reference with the don'ts on the face of it, locally signed; a 24-hour check-in that doubles as the report; a recovery track that ends in a physio prompt; and a care-team view that reads the log in office hours. The team's own answer on the call, consolidating the right information, easy to search, easy to digest, decision with the human, is narrower than his: it stops at item 4.

Where the line sits, by his own account and the team's: no diagnosis, the decision stays with the human, guidance calibrated to severity with a built-in escalation, and local validation with the care team layered on top of the WFH text. He offered Nurse 02 for a trial run of the workflows, because the World Federation guidelines, in his words, are meant to be broad.

Where he and the debrief disagree

The debrief expected the meticulous logger to be the test case for logging as an input. He is, and his sheet is inventory first, bleeds second. What he wants from a log is not to be reminded to fill it but for someone on the other end to read it and call him in. Logging as input is confirmed; logging as receipt to the nurse is confirmed from the patient side too, with a condition: it only matters if the care team acts on it.

The debrief's "design for the conservative patient" holds for his target joints and does not hold at night. A conservative patient who waits until morning because a nine-vial reconstitution at 2am is beyond him is a different failure from Patient 01's "could I get away with it". For him the night card has one job: make the infusion smaller.

The debrief asked how big the pain outside clinic hours really is. His answer: one off-hours bleed in the past year, handled alone, plus a night of red urine some years ago, handled alone. The pain is real and rare, and he places it in "then what next" after the first dose and in the recovery months after, not in the night itself.

The debrief's hidden question, permission to wait, is answered: yes, for muscle aches with a trigger, and nobody gave it to him. He took it.

What this changes in the build

  1. 1

    Search is a first-class entry, not only the body map. He described typing the site and reading the don't. The library screens need a search box on the home screen and a "do not" line at the top of every site card, with URN-04's tranexamic acid rule the model. His words for the format: "simple to understand", "a very clear don't".

  2. 2

    The 24-hour check-in becomes the report. OUT-13's better / same / worse is exactly the prompt he asked for. Wire it so the answer is what the nurse sees, and say so on the card: this goes to your care team when they are next in. That is the receipt Gerald wants and the platform he wants, in one screen.

  3. 3

    Recovery gets a track, not a card. OUT-12 should run past day three: the physio prompt, a note that the joint that bled is now the one most likely to bleed again, and the question he could not answer alone, when and how to scale exercise down and back up. Content for that needs a physiotherapist's signature; he is sourcing one through Nurse 02.

  4. 4

    A care-team view is now asked for by a patient, not only a nurse. Even a read-only log page for the nurse, office hours only, would meet his ask. Scope it as the v3 spike, not v2.

  5. 5

    The night card should shrink the infusion, not argue for it. Add to NGT or the profile: a checklist for his own kit (vials, saline, butterfly, sterilising, disposal) so the reconstitution is not worked out from memory at 2am, and the honest line, in his words, that asleep and immobile he cannot react for six or seven hours. Confirm with the nurse before shipping any of that.

  6. 6

    Which hospital is a card. He goes to Hospital B A&E because the nurse and the haematologist are there; an ambulance takes you to the nearest. The profile's named centre should print on the A&E card with the line "tell the ambulance crew your centre"; check with the nurse whether SCDF will honour it.

  7. 7

    Mild, on-demand patients need a lane. Profile: on prophylaxis or on demand. On demand with no factor at home routes to A&E for any bleed. One sentence on SET-11's dose screen covers it.

  8. 8

    The lower dose is a real option for non-joint sites. The nurse dropped him from twelve to nine for the urine. The profile's two doses, usual and upper, match his; the urine card can say "your usual dose is enough unless your nurse says otherwise", which is what she told him.

  9. 9

    Cover-nurse variation is an argument for the signed card. He raised it unprompted: when the main nurse is on leave the advice can differ. A card signed by the centre is the same answer every week. Use the line in the pitch.

  10. 10

    Outcome claims for the pitch, in HSS's words. Reduce long-term joint and muscle damage by getting every bleed reviewed and recovery done properly; reduce anxiety for caregivers. Do not claim fewer bleeds.

Corrections to earlier files

  1. Patient 01 block, the group chat insight: Patient 03 confirms the group chat carries "my kid's having a bleed, what should I do" at night and that the answers are subjective. Kept as written.
  2. Nurse block, build item 7, "same as usual" dose: Hospital B is not uniformly one number. Patient 03, an Hospital B patient, carries two. Softened to one or two numbers, set by the centre.
  3. UX files, failure mode 6, the profile as the verbal consultation written down: his consultation includes three A&E triggers he cannot source. The profile can carry them as "what your team told you", to be confirmed by the nurse.
  4. The Wispr manual note: "Hospital B has no haemophilia nurse" is wrong. Hospital B and Hospital C each have a dedicated haemophilia nurse; Hospital A, where Patient 01 is followed, does not.

Persona ledger

  1. Adult patient: validated three times, by Patient 01, by the nurse's cohort, and by Patient 03, and now in two styles, wait and see and conservative.
  2. Caregivers: still unvalidated, and Patient 03 says parents of young children are a different population with their own set of needs.
  3. Mild on-demand patients: new, raised by Patient 03, unbuilt.

What to ask next

The prep sheet for interview 03 sits in the debrief block above; this list is the longer backlog. What a confident adult and one nurse's cohort could not settle between them, and who can.

  1. Nurse 02, back next week: which physiotherapist could take part; whether the 24-hour report should reach her as a message or a page; whether Hospital B's monthly log could be replaced by the app's export.
  2. Sunday 13 September: Patient 03 will be in the room for the mentor drill. Ask him to say the "middle ground" line himself.
  3. Stage 7, with a physiotherapist: the minimum safe recovery card for a joint bleed, the scale-down and scale-up rules after a bleed, and what a patient can safely judge alone, given the nurse's view that intensity cannot be self-assessed.
  4. With a haematologist, the edge cases: presentations where a dose before A&E is wrong, for example a suspected inhibitor or a patient on emicizumab, and what dosage decision a haematologist would never delegate to a card.
  5. Dosing, with an inhibitor patient and a parent: whether anyone actually calculates at the needle, and what changes when the two prescribed numbers do not fit the situation.
  6. The group chat's repeat questions, via Patient 01, over WhatsApp: he offered to take the team's questions to the patient group. Ask him for the group's night questions, verbatim, and whether Hospital A patients have any named contact at all.
  7. The caregiver's threshold, with a parent of a young child and a Hospital C nurse: what they look for from the outside, when they stop waiting, how they were taught it, and how a parent's call differs from an adult's, since the Hospital B cohort gave no caregiver signal.
  8. Handover, with an ED or triage nurse: what they need from a patient who arrives at 2am, and what a card on a phone could carry.
  9. Trust, across more patients: whether a government or institutional stamp is enough, or whether the card also needs their own centre's name to be believed.
  10. The morning episode: how many adults' episodes start on waking rather than at night, and what that does to the re-check timing.
  11. Hospital B, whether a checklist has ever been drafted: whether a patient-facing checklist has been attempted before, and who at the centre would sign one.
  12. The survey's remaining questions: q24 on how long before judging, q25 on what happens next if not improved, and q26 on after it settles, now have a clinician baseline to compare against; the reporting-frequency question should offer "only for unusual sites" as an answer, and the night-infusion-time question should offer "over an hour".

Sources

  1. Team primary research, Interview with Patient 01 from HSS, in person, 6 Sep 2026, recorded twice. The full transcript is Rachel's recording, unattributed; Gerald's recording carries speaker labels for the first half. All quotes on this page are from the transcript, trimmed of filler.
  2. Team Miro board, 2 · Problem Framing and Journey Canvas: core problem statement, personas, seven-stage journey and pain cards, as of 6 Sep 2026
  3. Team Miro board, Patient Interview Guide: Off-Hours Bleed Management and Decision-Making, the question set used in the session
  4. Team primary research, Patient Journey and Pain Points, HSS Summary, 30 Aug 2026
  5. Team primary research, AuraHack, Emergency and Acute Care Problem Discovery, 31 Aug 2026
  6. Team primary research, Call with Nurse 02, Hospital B haemophilia nurse, video call, 7 Sep 2026, recorded and transcribed.
  7. Team Miro board, Clinician Interview Guide, Nurse Interview, the question set used
  8. Team primary research, Team Debrief, video call, 7 Sep 2026, recorded and transcribed.
  9. Team primary research, Interview with Patient 03, HSS, video call, 9 Sep 2026, recorded and transcribed.

A HackitRx 2026 entry by AuraHack: Ariel Tan, Rachel Koh, Myo Myo Swe Oo and Gerald Ho. See the team.

Everything on this page comes from three accounts, two patients and one nurse, and the team's own debrief, and should be read as three data points and one internal discussion, not a finding about all patients or all nurses. Compiled 6 to 9 Sep 2026 for HackitRx 2026 research. Companion to the patient journey file, the case files and the solution files. Illustration AI-generated (Codex CLI), art-directed to the Patient Files design system.