I'm Ph.D Pharmacologist + Immunologist and Intellectual Property expert. I have been calling for a more robust and centralized COVID-19 database-not just positive test cases. AMA!

I've been tracking confirmed cases and deaths from DPH sites in the US, and have just started tracking negative/total tests as well. I have the data for 32 states which includes both public and private labs, would this be of any assistance? I am also aware of another spreadsheet that has a more complete negative/total cases report than mine, just I am not sure where their data is coming from.

Edit: link for anyone wondering

2nd Edit: uploaded my second update video, on sheet linked above

Yes, you are exactly whom we want to talk to. Please PM.

I am a retired Primary Examiner. Have you thought about volunteering your services to help expedite patent applications for COVID19 related inventions?

Do you/anyone know of a process for doing so? I'd like to know, I would feel good about volunteering.

I am trying to organise an effort to make drug companies and other researchers aware that people like us exist.

I have specific institutional knowledge that can shave months (even years) of patent pendency and help bring cures to the market much sooner.

It would be my pleasure to assist. Feel free to PM contact info and we can continue the conversation

I wouldnt think the problem with efficiency is patent prosecution. The issue is FDA approval generally takes a long time to evaluate safety and efficacy of a drug. If a patent is still pending, a drug company could push forward selling a drug if the FDA has approved it.

I say this as a patent attorney. I know it can take forever to prosecute a patent. Usually a drug patent has less than 10 years or less than 5 years before expiration when a drug is finally approved.

On the one hand, I prosecuted the Lyrica portfolio with a first filing in 1989 and a first issuance in the US in 2001. But strategies have changed with the 20 years from filing life of a patent as opposed to 17 years from issuance in the pharma industry. I've filed accelerated cases in the gene editing field and obtained allowances in less that 14 months from filing.

I've seen the question asking whether or not someone can contract the virus again after fully recovering. All responses tend to be mixed, do you have a more definitive answer?

Although there is a complex answer to this question, the simple answer is that viruses mutate and can re-infect patients. But this is a hard process to predict.

Testing negative could be a false negative. Same with testing positive in that it could be a false positive. type I and type II errors

Very true....or many of the tests still are not rapidly giving responses. There is a chance that patient could have contracted the virus between the timing of submitting and sample and receiving their result. Someone who tests negatively might contract the infection the next day

What's the most ridiculous thing you've heard about COVID-19, but somebody believes it?

Made me laugh!

Most absurd is that gargling with bleach prevents this...you'd be better off drinking alcohol!

Joking aside, seriously, do not drink bleach.

And what could seriously help preventing to get infected with COVID-19, but is not a well-known fact?

Regarding PPE: you can't just wear the same mask every day. Keep in mind the outside of the mask can be infected and needs to be handled accordingly, same with gloves. Most people are not properly trained to remove/handle them correctly.

Ok, so regarding PPE, what do you think about the recent wave of people talking about making their own masks at home with tightly woven cotton and their sewing machines?

This type: https://youtu.be/4FB--BOyTiU

To repeat, wearing partially effective safety devices can embolden someone to go out and yet still be exposed to the virus. So there is a danger in that.

Why can’t a mask that can be decontaminated and reused be invented? One that goes into an autoclave or similar machine? I realize good business likes disposable but in times like this, why isn’t there an option for something that can be sterilized and reworn?

Inventions are thought up by people that recognize problems and then come up with solutions. They are often incremental improvements in crowded arts.

Google search your idea. But recognizing the problem is the first step. Now you need the solution.

I’ve read recently about heating the masks to somewhere around 158F

I'd stick to CDC guidelines

How long before things go back to the way they were? Months? Years? Thank you.

Short answer: The projection from the cdc is months.

Longer answer: Those who haven't had it aren't immune to it. And, the scary thing is that virologists don't even know the answer to this question.

How can we tell the difference between new case rates declining (as Italy's appears to be), versus merely reaching the limit of testing capacity? Would recording negative tests help with that?

If public health officials would tell you they’re running out of test kits, then there would clearly be a decrease in positives. And we are all certainly limited by the number of test kits available. The answer is not so much recording negative tests as much as being able to gather universal data by another means, such as https://Aitia.app

Will antibodies be detectable at a later date to determine who was once exposed and potentially now has immunity?

Many viruses leave "fingerprints" inside cells. There's more complicated answers but I'll leave at that.

What gives negative cases such importance in your opinion? What specific data may be overlooked?

It is as important to know where the virus has spread, as it is to know where it hasn't spread. For example, to know where to lock people down, and where not to lock people down.

But it is also important to know where infected people have traveled, because there is a high likelihood that they have infected an otherwise silent population who can then exponentially increase the spread of the virus, unless they are identified and isolated. This is why we see such value in collecting daily location data via Aitia

More generally, we also find great interest in the intersection of COVID-19 symptoms with symptoms of other infectious and non-infectious conditions (cold, flu, allergies).

since you mention the intersection of symptoms, would this then also be collecting how many positive and negative tests are for people with or without flu-like symptoms (i.e. flu-like symptoms and positive vs flu-like symptoms and negative etc)?

Yes, this is the direction we are heading, but do not yet ask those questions today. We are listening to our clinical + research advisers and public health officials to better understand particularly what data could be most useful in collecting.

Can you speak to why you are advocating for a more robust database? Should we be doing more testing?

The limitation right now is there are only around 1M tests available in US and ~350M Americans, so everyone cannot be tested. https://Aitia.app can instantly be available for free and be able to record for public health officials the earliest symptoms so that without official testing public health officials are given the means to track viral spread.

I'm worried that the growth in numbers in the US is more due to a growth in testing capacity. At some point the US is going to see growth flatten because testing has reached capacity. Since this change in the curve won't be due to a reduction in transmission I'm worried it'll be used to erroneously convince people the crisis is abating.

How do you feel about this?

You made a couple good points.

I think the same logic applies to how seriously people took the virus from its onset. Early, our numbers were artificially low because of the number of tests. Unfortunately, it takes alarmingly high number before the masses are convinced they actually need to change behavior.

And yes, I think the number of positive tests can be used to construe the situation on either end. Part of our initiative to collect data is to capture and represent how the average person is handling the pandemic. This include medical science, social science, etc.

Hi Dr. Kohn. What do you think is the biggest problem with tracking the spread of ccovid at the state and federal levels? Is aitia any different?

Present tracking gathers data from confirmed infected patients, 2-3 weeks after infection. During that time, instead of being isolated, those patients are transmitting to others. Need tracking that identifies carriers earlier, to isolate them earlier, and save lives.

Does the fact that only the severely ill get tested skew the data to disproportionately show a higher death/ infection rate? Or is this accounted for in statistics given by agencies like the CDC

That is an interesting point. By testing only the severely ill, we are getting an incomplete picture of the virus. While the death rate may indeed be lower, the rate of infection is likely much higher than what's being reported. This is not to minimize the lethality of this virus but instead suggests it's more widespread than reported.

This is a great point, and even more valid early on when the disease was spreading, and why those rates were varying so much day-to-day.

From personal regional experience, a bizarrely high standard was set to be able to be a candidate for testing, when we already knew that many people sick did not even exhibit any symptoms. More testing should level that off.

Regarding this “bizarrely high standard” to get tested, would you say someone who had fever, muscle aches, diarrhea, and chest tightness without shortness of breath should have been tested? A friend of mine has those exact symptoms last week, and Kaiser basically said “your symptoms aren’t severe enough to warrant a test. Call back again if you get worse, otherwise take basic supportive measures as if you had the flu, but stay inside for a week after you get better.”

At one point (not sure about now) New York was requiring you to have come in contact with someone who tested positive in order to quality for testing, regardless of symptoms. I think that speaks to testing availability. Someone with the same symptoms you described could be given a test one day, but not another. From a research perspective, we benefit from having as many people tested as possible--but there are logistical and cost issues there too.

You aren't tracking loss of smell. I've had this, along with my husband and lots of people here on Reddit. I think it's important to add it to your survey - https://www.usatoday.com/story/news/health/2020/03/24/coronavirus-symptoms-loss-smell-taste/2897385001/

The survey also doesn't collect symptoms people have had. I'd like to contribute, but I'm mostly feeling fine now, after experiencing symptoms for 10 days, so I feel like contributing my data for today isn't helpful. Maybe a section that just collects all symptoms from the past, and how long the person has been experiencing symptoms?

We actually have it in the next rollout. Thank you!

Also: We like your point about getting some history to get us "up to date" we will be implementing that in soon. A big reason for doing this AMA is to get feedback...we are in a unique position to be able to quickly make changes

Cool. One more thing I noted was that you're asking if people have been tested, but not if they've asked to be tested and denied. We have a group of 5 people who all most definitely have it, one of us is quite ill, but they won't test any of us without needing hospitalization. It seems like this is quite prevalent around the country and could be good data.

Great point--we are adding this in today, thank you

I've been collecting Canada's data, plotting it. One thing that has become apparent here is the lack of consistency when it comes to publicly available data, different numbers on the same page, and different counting methods between provinces. Can you explain why it's so difficult for these different organizations to report; is there no protocol or "industry standard"?

My guess is that the big issue with medical records is patient privacy. It prevents sharing not only of patient's ID, but of anything that could be an ID. So most policies of hospitals, doctors, etc, is not to share medical records. In fact, there are hospital associations that don't share records between their own hospitals.

there is no mandatory reporting to the CDC

Why the CDC though? Should this not be 100% handled by the WHO? And related to that, do you have any thoughts on the trials started so far by the WHO?

On a more vague note, in the UK Ben Goldacre has been very vocal in the past about the AllTrials campaign - are you aware if he, or others related to the AllTrials campaign, are doing things similar to what you've done with the aitia app?

Keep up the good work, this is so much more important than most people realise!!!

Thank you for recognizing the importance. It has been a battle for us to breakthrough to public health officials and we are continually looking for voices to support us. With regard to the CDC vs WHO, what you recognize is a lack of coordination due to a lack of international cooperation and leadership.

I have friends who claim they got COVID-19 back in December or January, and they live in Utah. They do travel frequently, and they did get pretty sick. But is this even possible? Utah’s first reported positive test case happened in March. Do you think the disease has been spreading around much longer than that and we just weren’t testing for it yet?

Transmission is a complex process. it can depend on where they traveled, where there friends traveled, and/or where some guy in the seat next to them who sneezed their way travelled.

Thank you for your willingness to step up and address us. My question: will the change to warmer spring and summer temperatures effect the virus ?

Possibly, but nobody that I've heard from has any certainty.

Thank you for taking the time to do this, I have two questions. How does not reporting negative test results benefit private companies, why would they keep that information to themselves? And what can we citizens do in order to make this, and other important data, available to the public?

What type of company? Testing companies or healthcare companies? Not clear why it would benefit a company, except the suspicious of an infection could lead to a lockdown of their workplace...I suspect they would like to avoid this as much as possible.

They might not be hoarding data, the issue might be the lack of means to report more broad data.

https://aitia.app is a means for collecting de-identified data from all users regarding the onset of COVID-19 infection and it compiles it in such away to make it available for public health.

I was informed a CBC panel could help test for COVID-19, is this true? If so, how accurate are the results?

A CBC panel would be an indicator of infection but I doubt it would be able to distinguish COVID-19 from another infection.

How can we best hope to help others in this time? I'm 35 and know there are more at-risk age groups that need assistance. How can I get groceries if they are hesitant to receive anything from me?

That's a hard question. The yin and yang is that you'd like to bring geriatrics groceries, what they need from drugs stores, etc., yet you don't want to infect them and any kind of in person communication can infect. There's no easy answer for that one.

Not holding you to anything, is there any places to donate in order to make our dollar go farther?

Great question--I do not know of an organization I cannot whole-heartedly endorse. I would suggest to consult local organizations, they can probably stretch your dollar.

I spent 4hrs with a customer, who was positive, in a room with limited ventilation, i am a tattooist so i was exposed to everything he had, he coughed on me, he bled, we shook hands and i was extremely close to him, he called us a day later and told us he was positive, after 5 days my wife had symptoms so we got tested, nose and mouth, 2 seperate test each, myself, wife and daughter all came back negative, was this just luck or does the virus not contagious after some time?

Luck

Dr. Kohn, I keep reading about local community sewing groups hand-sewing masks for medical personnel to help them with the current mass shortages. I suspect these are neither effective or acceptable, yet there continue to be requests (via Facebook and things like the NextDoor app) for sewers to come forward to mass produce these. These groups claim the hand-sewn masks are at least 50-80% effective, which is "better than nothing" and that hospitals and medical offices are grateful to get them. What are your thoughts about this?

For the average person, partially effective preventative measures like these masks can induce the wrong behavior, i.e., exposing people to virus that they wouldn't otherwise be exposed to because they're relying on an ineffective means of protection. So is it better than nothing? No. It's better to be quarantined.

For medical professionals, these masks are slightly better than nothing. But are they protected? Absolutely not.

ALmost every day I read news about databases being breached and peoples data being hacked/exposed to bad actors. What is your response to people that dont want their information gathered and exposed to this type of risk?

We collect data in a de-identified way....we do not store truly sensitive information--just data related to the virus. Further, we only collect location data at the time the user is entering responses...we are not data hoarding in the way that so many tracking apps do.

Do you plan on making this data publicly available? I am a data analyst and have been kicking around this idea since the get-go. There are a lot of analysts out there who could take this data and push out insights quickly, but detailed case-level detail is lacking to say the least.

Great idea!

Hi there, yes, absolutely. We have put together an API for our dataset and will be making that available to researchers shortly. PM me separately and we can get access going.

Yes, we have developed an API to allow programmatic access to de-identified data. There are so many covid dashboards regurgitating the same set of data...we wanted to bring more data to that landscape.

Don't hospitals share information on a linked network like law enforcement? If not, why?

They should, and that was the promise of digitized health records, but they currently do not do so in a way that's actionable in the case of an epidemic.

The "why" is very complex and surrounded by policy, but the reality is that the HL7 data standard is insufficient and we need more than just some software integrations to get independent systems communicating in a way that truly helps individuals patients as well as public health as a whole.

Have you heard of any data scraping initiatives?

I know you're talking about a different type of data collection initiative, but a friend of mine has created a public repo to allow any developer to help write a scraper for this site: https://coronadatascraper.com/#home

It's a place to collect and scrape data from government and healthcare websites and put it all in one place. He's about to get a lot of help from volunteers at google and I hope this can get big. I've started writing some scrapers, but it's a somewhat slow process. Anyone is allowed to help!

Thanks for sharing....we hadn't been looking in this area yet. From a quick glance the link you shared still relies on postings from official testing sites, but we will be taking a deeper dive!

If the tests are available, in countries that are in lockdown, should as many people as possible be tested? So that an accurate number of infected can be assertained.

If so, what kind of population percentage could we expect to actually be infected?

If not, why not? Other than the obvious logistical issues.

Your first question is a classic sampling question. If everybody in the population was tested, we would know exactly who was infected and who to isolate. The problem is that there are not enough tests. https://Aitia.app, a free application, can reach a critical amount of people to be able to track and locate viral spread, which can help public health officials.

Any good news as of late? :(

More and faster tests are being developed. State governments are taking all of this seriously. Use of aitia.app is growing.

Hi Dr. Kohn!

I have a few questions, an answer to any would be very much appreciated.

1) how could we expedite the process to create more tests? In a realistic way, how can we mass produce the tests and QUICK?

2) what is the trouble with finding treatments? Or how come it’s so difficult for us to find reliable treatment? And how can we expedite this process? Is it true about the malaria and z-pack?

3) To add to that, same questions for finding a vaccine; besides the trial phases which I know take time, I feel like we’ve had much difficulty creating a vaccine. How does this process go quicker?

Sorry to overload you with questions, again any answers would be so much appreciated!

I'll answer your first question... The creation of tests is limited to the production capacities of factories. If more factories were enlisted, there'd be more production of tests. Since there are effective tests, there is no reason why production shouldn't be increased. It's a matter of capacity, which is a matter of enlisting other companies to make it.

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There's a balance between people's economic and social needs vs. absolute quarantine. Lockdowns and quarantines are effective to reduce the amount of transmission of the disease, but in order to ease the stress on the healthcare system they are necessary. Bottom line: without a vaccine or therapeutic, those that were quarantined are still susceptible to infection.

Should states that have high cases, like FL, go on lockdown if they aren’t already?

In my opinion, yes.

How worried should we be about getting COVID-19? And what are the best preventative strategies we can use to stop ourselves from getting it? Especially for people still at work e.g. working in supermarkets

I think we should all be worried. It is highly contagious and can be dangerous for all age groups but especially the elderly. The best preventatives will be familiar: self-quarantine, washing your hands, and wiping down high traffic surfaces.

Besides the obvious, get instruction on how to handle the gloves and masks you may be using. it doesn't do any good to wear them and then as you remove them handle the outside of them where the virus may reside. You all are part of the unsung heroes.

I am a 30 year old male in great health (eat healthy, exercise many days a week, take care of myself) but I am also a Type 1 Diabetic. While everyone has told me to be cautious, others claim I might still be okay if I catch COVID-19. My fear is that I’ll literally die because my immune system is compromised.

What is the realistic outlook for this, for people like myself who are young with a compromised immune system, but still quite healthy?

On the one hand, consult your doctor. But know that anxiety doesn't help immunity and probably won't change things. So relax and keep looking for the light at the end of the tunnel. Be well.

I’m gonna need groceries soon (wife is immune compromised). We ordered them online and will be picking them up.

How safe is this!? Thank you.

It's probably the best you can do. And that's the challenge, trying to find out what is the best. Again, reference to your state HHS and to CDC guidelines is the best guidance.

I never get sick, never get the flu, don't get the flu shot, and I work (currently) as a flight attendant and I used to be an Emergency Medical Tech. I got bled on, puked on, sneezed on. I was always fine. I traveled for fun at the end of last November, and I came down with an aggressive flu that I almost died from. It was so bad that I collapsed the second I got out of bed. I had such bad fluid in my lungs that I couldn't breath, and it felt like there was spackle on my lungs. Being an idiot guy, I took a handful of mucinex and passed out for 12 hours. I was delerious with fever, and kept quarrantined from everyone for about two weeks. SO, my question is, that if I had the Corona back in November, and I got tested today, would i test positive, and, what is the likelyhood I could get it again, or a similar strain, or am I immune?

I doubt anyone has absolute answers to any of your questions.These types of viruses have to be studied and characterized. They require epidemiologists to study their spread, movement, and danger, as well as the effects of drugs for treating the symptoms as well as irradiating the virus itself. I suggest acting like everyone else to protect yourself and others from you transmitting it if you are exposed to it.

Hello dr! How are you? I wanted to ask whether remdesivir is really turning out to be a game changer against coronavirus or not?

As Dr. Fauci says, the jury is out. The good news is that testing for this could get a product, if it worked, out a lot sooner than a vaccine.

If you are aware of any: What research is being done to understand the effects/effectiveness of the communications during this pandemic? It would be interesting to examine how information moves and how communication impacts the data for positive and negative test results... How do those communications stress or alleviate stress on the health care system?

This is a great question! I don't know of any research to that effect, except for folks looking at social media data. Could be an interesting thing to add to the work we're doing.

1. Early on I heard that PCR test kits have to repeated, and only after three negative results somebody is considered (very likely) as not having an active infection. So, when I look at the statistics on how many tests different countries have done I wonder whether these are per patient or per single test, and if they all send in the same data.
2. I also wanted to ask how the development of antibody tests is coming along.
3. And, when I looked at the stratification of positive results in my country yesterday I saw there were about 60% male cases, 40% female. Is there any data on whether mild to moderate cases are milder in women, or more asymptomatic cases in women? (Not that I'd complain, but as there is a majority of female health care workers I wonder if that might have consequences on local outbreaks.)

There is no present normalization of test data from shared data between countries. So whether the test is PCR based or otherwise, the basis for the data is unclear. There is news regarding a 48 hour test that was approved, but it needs to be mass produced and distributed. Regarding male and female disparity, my wife would say that the females are just smarter. But there is no conclusions that can be drawn at this time. One of the benefits of Aitia.app is that it can provide the kind of data to allow public health officials and experts to derive those kinds of conclusions.

What are your thoughts on Donald Trump recommending medications?

Leaving politics aside, one word comes to mind: inappropriate. Medical experts should be talking about medications.

Who do you consider to be trusted/reliable sources to get news from? What publications, labs, scientific journals, are your “go to” sites? Thanks for doing this btw!! Great info you’ve been sharing!!

I like NPR and BBC and, in this case, the CDC site. The trick is to weed out the politics to get the actual news.

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I would refer you to the CDC for this one.