A new world of DIY medical testing
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Yes, we’ll get you scheduled for that initial consult in a couple weeks, then a few weeks after that we can probably get you a test appointment, then a follow-up consultation a few weeks later. We might have to repeat that cycle a few times to get all the tests. The epitome of speedy treatment (/s)—but only if you’re an existing patient. If you’re a new patient, then bump that up a few months.
And much of that time will need to be during weekdays during work hours, over multiple week days probably, and with so many unknowns about how much time it’ll actually take. I dunno how people without semi-flexible white collar work situations do anything with the healthcare system at all. I guess they either don’t, or they just have no vacation time left for actual vacation, ever. Especially if they have kids they need to guide through the same time-wasting bullshit.
Interacting with doctors takes me like 45-60 minutes for every five minutes of doctor time, at best. It’s fucking miserable. That’s the actual main benefit of things like telehealth, at least I can get a referral spending only 2-3x as much of my own time’s as the doctor’s, and all I have to do is give up all the benefits of having an actual family doctor who knows my history and also a good chance of just being told to see a GP anyway.
Insurance company, starry-eyed: “You mean they can’t make many claims and we keep all the money?”
Employer, salivating: “and they won’t be able to take leave for more than a few hours at a time?!”
They want you to use the insurance, so they can raise premiums and that % profit they're allowed to have is a larger absolute dollar amount.
The artificial scarcity created by doctors gatekeeping is unnecessary.
For example, I successfully diagnosed my own anemia disorder (thalassemia) this way. It's a simple test. I paid for it. The results are unequivocal. We can now stop giving me iron, thank you very much.
1: https://www.npr.org/sections/health-shots/2022/06/13/1104141...
Got an appointment in less than a day. The nurse practitioner probably gave me a more thorough look over (absent labs) than my primary care would have. Gave me an inhaler prescription probably as much to do something other than tell me to just continue the OTC medication I was already taking.
Sure, in an ideal world, we'd probably have a next-day MD appointment for everyone. But there's a ton of stuff when an ER or physician isn't really called for.
And France places an ER doctor in emergency response ambulances - apparently that has value (and they sometimes park themselves while the doctor works to stabilize the patient rather than try to bounce around to the ER.)
Same for France and urgent care. If the phone screen goes in the right direction, a doctor driving around from patient to patient will get to you quickly (~ 20 minutes last time for me.) Even if you don't have local insurance, and for a surprisingly low price.
None of this is impossible - as the US med professions want you to believe.
I'm not a hypochondriac and maybe in a pre-COVID world I'd just have assumed I was "fine" but having a second opinion seemed warranted given the option.
I've also been in an ER when the diagnosis from an infectious disease specialist (after some really bad lab work and high fever) was basically go home, rest, and drink plenty of fluids when his assessment (of a fairly serious tropical disease) took a month to be confirmed from a lab in Paris.
So we just basically self-diagnose and assume it will all just get better?
In one case, it would have been pretty ridiculous for me to have gone to the ER given that I didn't otherwise have COVID or other serious symptoms.
In the other case, in spite of a pretty high fever, I'm quite confident that had I gone into the local rural ER at the time they would have had zero idea about the tropical disease I had and, even after I got home with a fairly persistent mild fever, my very experienced primary care MD just knew that my blood work looked bad and it took an on-call infectious disease specialist to know what was going on.
You're not always going to have an expert specialist available.
Not that it mattered in either case because there wasn't really anything they could do other than let my body do its thing.
NP: "if it gets worse go to the ER" Thanks...I guess.
So baseline if you're smart and hard working, you need to take the hardest college track from ages 18-22, medical school (22-26). Then work two jobs worth of hours as a trainee making well under 100k starting at age 27 and into your early 30s [3] so you can't save or pay down any of your debt from getting here.
So if you choose to be a doctor, you have to: (a) dedicate to working your ass off at 18, (b) keep at it until you're in your early 30s, (c) start with massive debt
I think it's actually pretty amazing that we have as many doctors as we do.
[1] https://medschoolinsiders.com/medical-student/how-long-is-re... [2] https://www.ama-assn.org/medical-students/preparing-residenc... [3] https://www.inspiraadvantage.com/blog/how-much-do-medical-re...
Why not just expand the amount of spots and train more doctors? Surely they don't take everyone that applies and then filter them out (even CS doesn't do that).
In my opinion though, I can't see why the number of doctors should be something that is principally controlled by congress at all, and ideally some other method should come about.
Until that happens though, it's up to Congress to fix this.
Looking around the world, it seems to me that most developed countries (if not all) suffer from the same problem of lack of doctors. Some mask it by pulling doctors from poorer countries (including poorer developed countries), but it seems like there's a lack of doctors everywhere. If that's the case then Congress can't really be the only limiting factor.
Why are there no developed countries that have far too many doctors? The only countries that I can think of that export doctors are Cuba and third world countries.
Much of the medical field is like this unfortunately, it's not just doctors. Take for example this article about Duke's Nursing School and racism: https://archive.is/DIJ98. From what I've heard through third-party, corruption at Duke is at an all-time high. This is just the stuff we hear about too, so I'm sure these problems affect all of the top-tier colleges that nobody reports so they don't get ejected from these programs.
Unfortunately most people taking notice of how broken the system is end up get fixated on the large figures on those fraudulent bills, and think single payer can do something to fix at least part of the system. But systematically, at best single payer would be tying the garbage bag off for tidy disposal, when what we actually need is for the sheer majority of medical care to have a functioning market that allows for patient agency.
But when you have to choose between a overworked and exhausted doctor, who gives you 10 seconds of slight attention, then I might choose the AI, mixed with my own judgement.
Anyway, why not more of both? Better AI tools and more doctors?
Blood count tests used to be done by people actually counting cells. Now, it's all machines, likely even in a very poor countries.
Please don't add racial and gender resentments into an already bad problem.
Neither the US nor Europe has enough medical professionals to drag arbitrary racial and gender demands into the mix.
And without old doctors in general being willing to work even though they could enjoy their retirement, many places in Europe would have no healthcare left. Which doesn't bode well for 2040 or 2050.
We can learn new domains, assess risk, and evaluate trade-offs.
This is our health. Self-research is love. It's advocating on your behalf.
That is completely meaningless in this context.
One thing you plausibly could do is attempt medical tourism, if nothing else, your perspective will improve.
At the start of the pandemic, the general unavailability of mainstream supply chain covid testing apparatus combined with an absolute torrent of cash, somewhere around 900 billion in total overall, created a cottage industry in covid testing startups. At the time the institutional thinking was that this was "a good thing" because existing infrastructure had a 0% of meeting covid testing demand. The FDA and other regulators more or less abandoned what little oversight of lab developed tests (LDT) there was during this period. They remain lightly regulated. Fast forward to today, a large number of the covid testing startups still exist and are sitting on mountains of cash, having come up in the age of LDTs they are going to continue to min/max that shaky regulatory framework. People in the startup sphere of influence constantly complain about the FDA being too involved in regulation. LDTs will lead to innovations as well as a abuses, I predict many people will complain their regulation is too lax. Such is the way of trying to regulate anything in healthcare.
Oh, definitely. No matter how tight or lax the regulation is, people will complain any existing regulations are too lax, and too harsh.
The more interesting bit how different populations will respond.
The do you own research folks will complain about both sides: both that the regulations are too tight and too loose. "Be better" will be thrown about.
Underrepresented minorities will hear all the noise, not hear many people of their own group, and inherently distrust the whole thing.
The people who actually own the problem will try to ignore the noise and focus on doing their jobs, keeping their own comments to themselves, thus depriving the conversation of the voices that would be most helpful.
The silent majority (or at least largest minority) will quietly make decisions based on un-admitted allegiances and biases.
It's when this inevitably leads to uninformed people making bad decisions for others based on easily available that they don't understand -- that is the problem. We've already seen this with shitty Covid tests. We see it all the time when insurance companies use the cheapest routes to "resolve" specific maladies.
If something can be exploited, it will be exploited in a capitalist economy. And everyone needs healthcare eventually.
This is going to simply accelerate the shit show.
There's definitely a line; non-medical professionals probably shouldn't be checking their own X-rays for fractures or CAT scans for cancer. On the other hand, I do very much think people could do things like perform and read their own tests for non-life-threatening infections.
Joe Schmoe can swab their own throat, and tell whether there's 1 line or 2. If you want to be super cautious, require a Bluetooth app to read the results and force the user to run through the typical "annoying but not lethal infection" questionnaire doctors give (Is your fever over 102F? Shortness of breath? etc). The app can give warnings that regardless of results, they should seek a doctor.
It would also free up doctors and nurses to do something more valuable than administering tests a child could do. Again, this doesn't apply universally, many medical things require far too much knowledge for Joe Schmoe to do, but I do think there are a lot of things that could be the equivalent of a home blood pressure monitor.
Not sure what you're talking about with covid tests. People either had it or didn't. The decision making process was straightforward. Rest and isolate, or treat something different like the flu. If one was seriously ill, go to the ER. Several Covid medications like Paxlovid were still locked behind a medical professional with Rx power.
People doing crazy things is always going to be a reality, whether there is tests and data out there. At least they could positively know whether they had it or not. Is it a problem that some would be obsessive and test themselves constantly? Sure. But whatever. It's the same problem like with bread and milk before a big storm. Obsessive compulsion will always be a part of the human condition. It's healthy to accept that these behaviors will happen, but to police that behavior at the expense of the educated (that can inform themselves) would be a net loss to society.
No it wasn't, not at all!
You (and most people) put an awful lot of trust in medical tests, which are frequently wrong (in both directions).
In the case of COVID, there was (and still is, in some circles) the notion of 'exposure'--if you had dinner with someone who then tested positive the next day, should you cancel the NYE party you're hosting in 3 days? Even if you test negative the day of the party, it's a minefield. How much do you tell your guests, and when? Knowing that the party attendance will be halved if you say anything at all.
I think I am pretty capable to look up what a lot of the data means and make decisions based on that. One possible decision may be to consult a specialist.
It may well be that many LDTs are quite reproducible, but there's now oversight on that at the moment. You could set up a lab in your garage and start billing people out-of-pocket for the results of a Ouija board.
If you want some policy opinions from the College of American Pathologists, feel free to lodge them here: https://www.cap.org/advocacy/laboratory-oversight-and-regula...
That seems to be a senseless concern, since offered the evidence of a lab test, a physician should be prompted to investigate further. No physician (nor individual) should ever be making a diagnosis or treatment decision based on a single line of evidence.
More importantly, such results can help offer hard evidence to pressure one's physician to investigate a particular complaint, which can be difficult to convey or to convince the physician it's real. Physicians are often dismissive of things that they do not understand, or of certain classes of patients. Consequently many patients are forced to figure out the source of the problem for themselves.
With a lab based test result, you can go to a physician and say, "Hey, this isn't just my imagination nor some kind of over-reaction. It's tangible and externally verifiable."
And for those without a GP, waitlisted like myself (5+ years waiting here in Canada!), such tests can help one navigate our piecemeal medical system more effectively.
Talking in absolutes like this doesn't help the rest of your point. There are plenty of situations where a single result is sufficient to trigger a whirlwind of treatment decisions.
> More importantly, such results can help offer hard evidence to pressure one's physician to investigate a particular complaint, which can be difficult to convey or to convince the physician it's real. Physicians are often dismissive of things that they do not understand, or of certain classes of patients
If you've ever been sitting on the other side of a consult you would recognize that this statement isn't all that accurate of a characterization. As much as people like to believe they are outsmarting navel-gazing doctors, the reality is that with sufficient time and adequate resources most of these "complex issues" can be diagnosed and treated. The problem lies in that most providers have a 15 minute window to determine if the patient is part of the boring 80%, or if the patient's problem will require time you don't have. Until provider shortages are solved, that will be how it works in order to do the most good on the whole. Berating and pressuring them will just contribute to the burnout that in turn contributes to shortages. The source of the problem is above them.
You talk like an engineer who only has one product/project/patient to work on for weeks/months/years. A doctor has to see 40 patients a day, and the next day there are a completely new set of 40 patients etc. To investigate further the quality of a lab test result isn't something a physician has much time to do unfortunately.
For me personally, there should be a substantial difference between a surgeon and a diagnostician. Someone who's only job it is to look at evidence and lab results and walk through what problems it could be. This is a wholly different job than actually doing any of the procedures and would attract new people.
Moreover, I know many doctors who are skilled surgeons but terrible at diagnosis.
Take my own wife, who, up until we figured out what worked for her and found a doctor willing to do it, had miscarriage after miscarriage (seven total), and the fix was fairly straightforward, but it took forever to get there, and most of the obstetricians and MFMs we saw (great surgeons, themselves), were not actually very knowledgeable on the latest research. Nor should they be. The intricacies of various blood disorderse, genetic recombinations, etc, has so little to do with their practice of gynecological surgery that it's crazy we confuse the two. At the end of the day it took my wife and I (both coming from scientific backgrounds and familiar with academia and statistics) took matters into our own hands, got familiar with the data, and suggested appropriate treatments (which have worked several times now in a row, so clearly something changed, unless probability is really trying to screw with us).
I think what is missing is also something in between nurses and doctors, who can take more formal responsibilities than a nurse and offload the doctors.
And there should be a track to directly become a surgeon instead of first become a specialist doctor and then do surgery education after that, those roles should be different. The education for doctors is overall just too long for little benefit.
The public need to be educated that these tests are a lower cost "pre-test".
In Australia, we are given an FIT test for colon cancer when we turn 50. This test is 79% accurate. This is a simple at home test, no doctors involved, just mail in your sample, get a result, and then if the result is positive, go to a doctor for follow-up.
We call these screening tests.
> doctor can say "ok, you had this result from an unverified lab, let's do a more thorough test and see what we find"
The more likely scenario is that this is the 10th patient this week presenting for suspected cancer based on an at home administration kit with a low specificity (under ideal conditions), and it turns out it's not. Conducting such tests indiscriminately (voluntary and self administered) is going to waste a ton of doctor time that we don't have.
> The public need to be educated that these tests are a lower cost "pre-test"
Anything that requires education of the public about anything is unfortunately a losing battle.
> we are given an FIT test for colon cancer when we turn 50. This test is 79% accurate. This is a simple at home test, no doctors involved
This can work with a structured protocol. The problem is that at least in the US, we will have direct to consumer labs chasing next quarter's revenue numbers, so everyone will be shown commercials and be grabbing them off of shelves to avoid seeing expensive doctors that they don't trust. It's a recipe for a lot of unnecessary anxiety and time wasted.
1. Urinary tract infection testing: 4 tests at home for $10, or same test at the hospital for $300 (nominally as reported to insurance).
2. Night dental guards: $100 for good quality custom mold versus $800 at the dentist.
3. Eyeglasses: $36 at Zenni versus $400 at the eye doctor.
I wish there is more of this available... Some kind of home cholesterol test would be awesome.
They can certainly be quite misleading though. Eg food intolerance tests are pretty directly linked to things you ate recently.
The sole positive aspect I see is the mere fact that some devices used to be very expensive so only present in some labs, while today almost anyone can own one, allowing for "home testing" of many thing or doctor's cabinet tested without much traveling and bureaucracy. That's good, but can't replace the destruction of Medicine for the sake of commerce.
Its not just happening in the USA its a worldwide phenomena. The more the world and healthcare especially ignores the Long Covid problem the more people will turn to private diagnostics and treatments away from existing healthcare.
I don't know if the research will get down to one thing or a multitude of treatments or how quickly its going to be, things are going quite slowly its a very complex disease. Nothing is in development yet directly targeting it due to a lack of accepted biomarker and true understanding. Its not that we don't know a lot we just don't know which bits matter and whether existing treatments work on them.
Its pretty concerning, that there is no treatments let alone a cure, because every infection can cause Long Covid. Its about 13% chance every time you catch Covid. There is no lasting immunity to Covid or Long Covid that we know of nor genetic commonality. Current CDC projections suggests everyone will have this disease in their life and recovery is very rare. We are looking at a worldwide disabling event and not a lot of research money to get to the bottom of it from governments nor any social support for the 100s of millions already disabled by it.
We already know that disability in general tends to be rendered invisible unless it's a really widespread condition, and long covid symptoms are themselves invisible to others.
This is why many dysautonomia clinics are seeing long covid patients. If long covid patient shows damage to small or large nerve fibers tested by EMG, skin punch and QSART, there is some treatments in the pipeline. WinSanTor is working on a cream which uses pirenzepine. In early studies it reversed nerve damage. It is being tested on diabetic neuropathy. Also, applying dysautonomia life style changes could potentially help people cope right now.
I have spoken directly to a chemist who took oral pirenzepine and cured his dysautonomia.
Just one small example is the amazing array of test strips we have for liquids: Pool test strips, drinking water test strips, urine test strips, blood test strips, drug (urine) test strips, pregnancy (urine) test strips, and much more.
Back during the COVID-19 pandemic, I set up 2 air particle checkers that returned the number of particles they found in each of (maybe 8) sizes. I put them in 2 clear tubes, and duct taped a COVID-19 mask between the tubes. A pair of fans moved air over the first checker, then through the mask, then through the second checker. I proved that below 2.5 microns, none of the COVID-19 masks people were wearing at work did anything. That was when I started laughing at the whole thing. This is the kind of tester I used: https://www.amazon.com/Digital-Quality-Detector-Tester-Monit... Checking if the testers read the same without a mask was a simple as taping the tubes together without a mask between them.
The electronic meters we have today is astounding. Digital meters that do not use test strips can measure dozens of gasses, from any explosive gas to O2, CO2, CO, LP (I know it's not a liquid when it's a gas, but they call it LP) and dozens more such gasses. The MQ series is really cool: https://robocraze.com/blogs/post/mq-series-gas-sensor
Note: The web links are not things I put up, and I do not make money off them. I only found them through web searches while knowing what subject matter I wanted to find.
Filtration is a statistics game and so is catching a virus. The more particle exposure you get, the more likely you are to get infected. The more mask material you have between you and the particles carrying the virus, the fewer reach your body.
But people are also expelling viruses while you have no symptoms, so lots of people who appear healthy are expelling viruses, and since they appear healthy, they are probably not going to wear masks.
For example, if you fly a lot in cramped air cabins, then wearing a cheap mask is not going to do much. What would do something is if every single person wore a mask all the time, since that would capture all the people who appear healthy but are shedding viruses, but that is obviously not realistic.
And if you hang out with a toddler that goes to daycare, no amount of masking makes any difference.
Please provide some data as to how many virus particles we inhale in particles larger than 2.5 microns and in particles smaller than 2.5 microns.
I am not aware of anyone having that data, therefore COVID-19 masks seem like guesswork without sufficient science to back them up.
“When you can measure what you are speaking about, and express it in numbers, you know something about it, when you cannot express it in numbers, your knowledge is of a meager and unsatisfactory kind; it may be the beginning of knowledge, but you have scarely, in your thoughts advanced to the stage of science.” ― Lord Kelvin
So the masks were helpful (because respiratory droplets range from <1um to >100um). [1][2]
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7805396/#sec2ti...
[2] https://royalsocietypublishing.org/doi/10.1098/rsfs.2021.004...
They blocked almost all of the particles larger than 2.5 microns, which surprised me.
The masks did nothing to block particles even a bit smaller than 2.5 microns. I checked the presence of particles at 1.0 microns or larger, and the after-the-mask number was only smaller by the number of particles 2.5 microns or larger that the mask had blocked. The ability of Chinese factories to make masks that filter that precisely surprised me even more.
> So the masks were helpful (because respiratory droplets range from > <1um to >100um).
They did something, but I do not have numbers on what quantity of virus particles we inhale from droplets in each size, so I can not do math or science on this.
“When you can measure what you are speaking about, and express it in numbers, you know something about it, when you cannot express it in numbers, your knowledge is of a meager and unsatisfactory kind; it may be the beginning of knowledge, but you have scarely, in your thoughts advanced to the stage of science.” ― Lord Kelvin
> That was when I started laughing at the whole thing.
In the GPs case I suspect they knew what result they wanted to find and avoided any articles about how masks worked, let alone checking the scientific literature.
> In the GPs case I suspect they knew what result they wanted to find and avoided any articles about how masks worked, let alone checking the scientific literature.
I spent a lot of time checking the literature and did better testing in my high-school classroom (as a teacher) than the CDIC did.
If you didn't manage to discover that the main benefit of lower grade masks is to restrict respiratory droplet movement then your literature search was very ineffective.
Did you use circular reasoning?
I would love to see some comparisons between cheap and expensive gas sensors. It's probably out there.
There is also a pretty reasonable argument that the main benefit is slowing down the velocity of air breathing out, keeping particles from spreading as far.
I might vaguely recall some masks claiming such filtration and failing miserably in my testing.
I would love to find such a mask that actually works. Can you please post a brand and model, or a link?
It's easy for anyone here to test them with the setup I described above.
You could fill up an aquarium, wait a week, then ask your phone what fish would like it. It might tell you to dechlorinate it and start it cycling before asking again.
It might know what fish you later put in it, and suggest things that would make the water better suited to those fish. If you need to raise the PH for African Cichlids, it might suggest crushed coral and show a paid advertisement for just such a product.
In some cases the sensors do not exists, at least not at low cost.
Sensor life is also a problem.
Part of my plan was to have some parts that used long-lasting color-changing sensors with color detectors to read the colors, and the system would prompt me to change them occasionally. SeaChem's Ammonia Alert is an example. I could not find a cheap electronic sensor that would test ammonia levels in water that would work in my system.
Another part of my plan was to have replaceable sensors (if possible) so a fish breeder or reseller with 100 tanks could move a few hang-on-back water testers to one tank and see if one of them has a reading that disagrees with the majority, and swap or replace cheap sensors as required. Replaceable sensors are hard to waterproof, but it is possible. I do not know if we can hobbyist-proof replaceable waterproof sensors. The first version would probably have to be disposable.
> I do think you could basically make it automatically read physical dip-in test strips
The issue with automatically using dip-in test sticks is you do should not return the water from the dip-in test strip to the tank. You end up with a significant amount of wastewater and used test strips that the customer must empty, and then they must refill the test strips that are not supposed to be exposed to air or water. That kills the system's marketability.