Watch
Demo video
The video follows Maria through the patient app and the clinician view, then shows Dana's Lyme card, Sofia's fibromyalgia card, the Atlas, the developer documentation, and the Data & AI page. It has no sound. Each scene has a caption on screen; the caption file and the transcript below give the same text.
Transcript
- 0:00 Undiagnosed No More looks for patients whose invisible illness, from Long COVID and ME/CFS to lupus and depression, is missing from the health record. Every patient shown is synthetic.
- 0:07 U.S. government data trains the UNOM AI models, which serve four users: clinicians, patients, policymakers, and developers. Each part of the picture opens its page.
- 0:17 The patient app opens on Maria's synthetic answers. Each page is one part of a validated questionnaire.
- 0:24 Her answers to the NIH RECOVER symptom questions and the DePaul questions on crashes after activity are already filled in.
- 0:31 Next steps on through daily life and the condition self-checks, where she chose the Long COVID check.
- 0:39 Her summary: 16 points on the RECOVER symptom score, which reaches the research cutoff of 11, a positive DePaul screen, and daily-life grade 3. Each card says what to discuss.
- 0:48 Patterns in my record runs the same nine models on her synthetic record, on the phone, and says in plain words what it finds. Patients never see a probability.
- 0:59 Print makes her visit summary. Download saves her answers as a FHIR file that clinic software can read.
- 1:06 The patient app is the only part of the site in Spanish. EspaƱol in the bar switches it, and English switches it back.
- 1:14 Send to my clinician (demo) opens the clinician view with her answers attached.
- 1:19 The clinician view opens on Maria's chart. Needs review marks Long COVID High: 15.4 times the average with her answers, 6.1 times from the chart alone.
- 1:27 From the patient: Review responses opens her answers from the patient app, with her RECOVER score, her screen result, her daily-life grade, and her own words.
- 1:34 The Long COVID tab shows each finding with an arrow, an odds ratio, and a bar on one fixed scale. The first row is her RECOVER answer, which multiplies the odds by 2.83.
- 1:43 Hovering a bar shows its effect: an estimate of 15.9% with her answers against 6.2% from the chart alone.
- 1:49 Hovering estimated 15.9% shows what is estimated: the chance of a first Long COVID code 91 to 455 days after COVID-19.
- 1:56 The timeline shows every dated visit, diagnosis, test, and prescription, with the COVID-19 index, day 90, and the scoring date.
- 2:04 Dana: the Lyme disease model marks her chart Elevated, 1.5 times the average, from an April visit for an insect or tick bite and a rash, treated with doxycycline.
- 2:11 Beside it: knee pain and facial nerve palsy from her chart, and her county's reported incidence, 72.44 cases per 100,000 people a year.
- 2:18 Sofia: six models flag her chart. Fibromyalgia is High, 24.6 times the average with her answers and 9.6 times from the chart alone.
- 2:25 Her answers enter through her fibromyalgia self-check, which matches the pattern of the 2016 criteria.
- 2:33 The Atlas shows one condition at a time. For Long COVID, 1 in 9 adults who have ever had it carry its code in their health record.
- 2:40 State map (CDC Household Pulse Survey): 5.3% of US adults currently have Long COVID, 2.6% in Illinois to 10.4% in Mississippi.
- 2:47 Who goes uncoded, by sex, age group, and race and ethnicity: 9.4% of women's Long COVID is coded, against 12.0% of men's.
- 2:54 Fibromyalgia by state: the share of people who report it who have a code, from 64% in Alabama to 79% in Pennsylvania.
- 3:01 Who goes uncoded: in every age, sex, and race and ethnicity group, a smaller share is coded than for hypertension and type 2 diabetes.
- 3:09 What else is in the record: in people who report fibromyalgia, Ehlers-Danlos syndrome or hypermobility was coded 5.0 times as often as in other survey respondents.
- 3:15 Back to Long COVID for the cost calculator: with the default assumptions, a two-step screen costs $116 in clinician time for each later-coded patient it finds.
- 3:23 Every assumption can be changed. With 10 minutes of clinician review per patient instead of 5, the two-step screen costs $233 for each patient found.
- 3:34 The developer documentation starts with how the pieces fit: the model files, one scorer, and the places it runs.
- 3:41 Try the scorer runs it in the browser on a synthetic test patient. Sofia with the fibromyalgia model scores High, 9.60 times the average, the same as the reference output.
- 3:49 The CDS Hooks service scores a chart sent from an EHR and answers with a card for each flagged condition. For Maria, one card: Long COVID, High, 6.1 times the average.
- 3:56 The model registry lists each versioned model file with its model card and expected outputs for 18 test patients.
- 4:04 The About page shows the data sources, the conditions, the models, the four papers, and the team.
- 4:16 Undiagnosed No More: the patient app, the clinician view, the Atlas, and the developer documentation, at undiagnosednomore.org.
Slide deck
The project in slides, for viewing in the browser or as a PDF.