LymeHQ · The field
It all goes out, and almost none of it comes back
A patient with a tick-borne illness generates a great deal of data: what they tell a clinician, what a laboratory measures, what a plan is billed, what the dog’s blood test found. It leaves them down six separate channels that do not talk to each other. This page follows each one, and asks the same question at the end of every branch — does anything return?
What this page is
Orientation, not a measurement. No arrow below is a count and nothing here is a claim about how much data moves. These are the ordinary routes a record takes in the United States, drawn so that the shape is visible at once — and drawn with the connections we could not state confidently left off rather than guessed. Section 03 names which ones, because a missing arrow on a diagram claiming to show a field is an overclaim in a quieter voice.
01 · The six channels
Where each piece actually goes
Each channel is a separate route with a separate owner. None of them was designed with the others in mind.
It all goes out
Six channels carry a patient’s data away from them. Two of them bring something back.
Nothing on this drawing is LymeHQ. It is the field as it is — including the two channels that already work.
No system joins these six channels to one another, least of all one the patient holds.
United States routes, drawn for orientation. Connections we could not state confidently are left off rather than guessed, and the page names which.
Orientation only — nothing on this drawing is a measurement, and no arrow is a count. These are the ordinary routes a record takes in the United States, each described in full on the page below. Connections we could not state confidently were left off rather than guessed, and the page says which ones and why. The surveillance channel is the one whose published end we draw elsewhere, from figures re-derived from the source on every build rather than transcribed by hand.
The visit
comes backwhat you tell a clinician then Clinician · back: your record, on request
Everything starts here. What you describe, what a clinician observes, and what they decide becomes the clinical note. You have a right of access to your own medical record, and in practice it usually arrives through a patient portal. Of the six channels on this drawing, this is the one whose return leg most reliably works.
In the directory: Infectious Diseases Society of America, International Lyme and Associated Diseases Society, American Academy of Neurology, American College of Rheumatology, VectorWise CME
Testing
weak returna specimen, ordered for you then Laboratory then Clinician · back: the report, via the ordering clinician
A clinician orders a test, a specimen goes to a laboratory, and the report goes back to the clinician who ordered it. That last clause is the shape of the whole channel: the laboratory’s customer is the ordering clinician. Results commonly reach you as well, through a portal — but they reach you as a consequence of that relationship rather than because you are a party to it.
In the directory: ARUP Laboratories, Galaxy Diagnostics, IGeneX, Labcorp, Quest Diagnostics, Infectious Diseases Society of America, International Lyme and Associated Diseases Society, American Academy of Neurology, American College of Rheumatology, VectorWise CME
The claim
comes backa claim for what was done then Payer · back: an explanation of benefits
A claim for what was done goes to the plan, which decides what it will pay. This is the second channel where something reliably comes back: the Explanation of Benefits, the plan’s own written account of what it decided and why. It is not a bill. It is the document an appeal argues with, which is why it is worth keeping every one of them.
In the directory: CMS Blue Button 2.0
Surveillance
nothing comes backa case report, once it is notifiable then State health department then CDC · back: nothing about your case comes back
Lyme disease is a notifiable condition. A clinician reports a case to the state health department — in most places a laboratory reports positive results too — and the state sends counts on to CDC, which publishes them. Once a case leaves the state it is a number. The counts come back to the public, which is what our surveillance guide and our map draw; nothing comes back to the person the case was.
In the directory: Council of State and Territorial Epidemiologists, CDC — Lyme disease programme, NNDSS surveillance case definitions
The household’s dog
nothing comes backthe household dog’s tick test then Veterinarian · back: nothing reaches the household’s people
A dog’s tick-borne disease test is run at a veterinary practice, and the result goes to the vet and the owner. It goes nowhere near human health, and that is not an oversight in anyone’s system: the two are separately regulated and separately recorded. It is still the case that a positive result is a statement about where ticks are, in a place where people also live.
In the directory: Companion Animal Parasite Council, IDEXX SNAP 4Dx Plus, Pet Disease Alerts
Research
nothing comes backde-identified, through registries then Researchers then Published literature · back: published, not routed back
Researchers work from pooled data: surveillance files, health-system records, and registries people join deliberately. De-identified data can be studied without asking each person, which is what makes population research possible at all and is also what makes this leg one-directional. Findings are published. They are not routed back to the people the data came from.
In the directory: ClinicalTrials.gov, Columbia Lyme and Tick-Borne Diseases Research Center, Johns Hopkins Lyme Disease Research Center, Lyme Disease Biobank, MyLymeData, Northeast Regional Center for Excellence in Vector-Borne Diseases
02 · What is not drawn
The omissions, said out loud
A diagram implies completeness whether or not it means to. These are the connections we left off, and why.
An arrow is read as a fact and carries no hedge. So a connection we could not describe confidently is not drawn faintly or labelled “sometimes” — it is left off, and named here instead, where a sentence can carry the qualification a shape cannot.
Records moving between clinicians
This one matters most, because the drawing says nothing joins these up and that could be read as a stronger claim than it is. Clinical records genuinely do move between practices through health information exchanges, and national arrangements are being built to move more. What no system does is assemble a laboratory report, a claim, a surveillance record and a veterinary result into one place — and least of all into a place the patient holds. That is the claim the drawing makes, and it is narrower than “nothing is connected”.
A patient handing data to researchers directly
People do join registries deliberately, and one of the largest is in the directory. It is not the main route by volume, though, and drawing the consented path as the primary one would flatter the field. The research channel is drawn as the route most data actually takes: de-identified, through registries and health systems, without an individual decision at the point of use.
Claims data reaching researchers
De-identified claims data is a real research input and we could not describe the route precisely enough to draw it. It is left off rather than sketched.
And two returns are drawn solid
The picture would be more striking with six dotted return legs, and it would be false. Your own clinical record and your plan’s explanation of benefits genuinely do come back to you. Drawing those two solid is what makes the four that do not mean anything at all — a diagram that can only report one answer is not reporting one.
03 · The gap
Nobody is holding the whole of it
Not a criticism of any one of these organisations. Every channel does the job it was built for.
Read the drawing again and the shape is not that anything is broken. Each channel works: the laboratory reports to the clinician who ordered the test, the state sends its counts to CDC, the plan explains what it decided, the vet tells the owner. Every one of them does the job it was designed for, and none of them was designed to do the others’.
What follows is that the only place these six could ever meet is the one point they all already touch — the person at the left-hand edge, who generated all of it and currently receives two of the six back. That is a structural fact about the diagram rather than an opinion about the field: there is no other node on it with a line to every channel.
Where we stand, once
That gap is what LymeHQ is trying to be useful in. We are not on the drawing, deliberately — a record a patient keeps is not a seventh channel, and we hold no authority any of these bodies has. What we can do is be the place the pieces a patient already owns can sit together, and send the aggregate back to the people who contributed it. How LymeHQ works says what is built today and what is not, and your data, your rules says what leaves and what does not. A reader who thinks the gap is fine, or that somebody else should fill it, has read the page correctly.
Where to go next
- The other half of thisResource directoryEvery organisation on this drawing, and every one that would not fit on it — with what each does and when we last checked.
- The surveillance channel, at its published endCase counts & trendsWhat the states send CDC, what CDC publishes, and what a reported count does and does not measure.
- The veterinary channelYour dog’s tick testWhat a positive canine result says about a household, and why that signal has nowhere to go today.
- What we build in the gapHow LymeHQ worksThe loop end to end — what you put in, who can see it, what comes back, and which parts are built.