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Where is the wider data collection?

(9 Posts)
YinMnBlue Sun 12-Apr-20 13:40:33

OK, we have the figures for tested cases in hospitals.

But where is the data gathering that tracks the REAL progress of the disease, and also the circumstances in which people are not catching it?

I know many many families where they have all had it.or where one or two have had it but not the rest- this includes my own family, One family member really poorly for 2 weeks, no one else in the house affected.

None of these people are showing up in the stats.

How can we find about about immunity and spread, who is at risk of getting infected and who is not, if we don't know this?

The Imperial Report was out quickly - could not one of the other big research institutions have partnered with the government and asked people to sign in online with symptoms, infection, and freedom from infection?

We have no idea how many people in this country have the virus or have caught the virus, only how many end up in hospital.

How can we think about next steps without knowing how many people really have it? Or what proportion have not caught it despite being shut in a house with an ill person?

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goingoverground Sun 12-Apr-20 13:59:19

Here's a nationwide study from Kings College, London:

covid.joinzoe.com/

Here is the NHS one, I was sent the link by my borough council who send a daily coronavirus email to everyone registered with their online services:

www.nhs.uk/coronavirus-status-checker

Moondust001 Sun 12-Apr-20 14:11:58

I know many many families where they have all had it.or where one or two have had it but not the rest- this includes my own family, One family member really poorly for 2 weeks, no one else in the house affected.

No. You really don't know that. You know that some people have exhibited symptoms that might belong to a dozen diagnoses that are not Covid-19. Unless you have actually had a test and a confirmed diagnosis, then you know nothing. Which is kind of your point, isn't it?

The symptom checker apps have the same problem. They check what people think, not what are factually diagnosed.

Whilst I agree with the premise that it would be better if we could have reliably tracked the disease so that future planning is easier, it would be entirely impossible to do this because:
(a) We do not have enough testing kits to check who actually has the disease as opposed to a number of random symptoms that may be indicative of many things.
(b) Even if we could test everyone who currently might have the disease, we currently have no antigen tests that allow us to test the rest of the population to find out whether they have already had it, and
(c) By the time we have those things, it will be too late. The world economy can't recover from an indefinite pause. Some sectors, businesses and people will probably never recover already. The longer this goes on, the worse it becomes.

LeeMiller Sun 12-Apr-20 14:37:26

Without testing, people can't know for sure they have had covid-19 and not something with similar symptoms. And even if it was covid-19, they also can't know that they haven't had it - the family members that you are assuming didn't catch it, might well have had it asymptomatically, again without testing there is no certainty.

Various countries are rolling out antibody testing for samples of the population to get a better picture of the number of community and asymptomatic cases.

goingoverground Sun 12-Apr-20 15:09:46

@Moondust001 The self reporting data will still be useful in the long term as we have data from testing at hospitals, there are small studies (and larger ones like Iceland/Wuhan) where whole communities are being tested, the Kings College study is testing participants who are part of their twin study, so it should be possible compare data and make adjustments for inaccuracies in self reporting to some extent. It's not perfect but it's still very useful and probably the most extensive epidemiological data every recorded in history. So, please, if you haven't already, sign up now.

In the short term, the NHS survey is really important too because they can see if there is a large increase in the number of people reporting symptoms in specific areas and plan ahead. Even if people are reporting symptoms that are actually due to hayfever or something else, you would expect the level of misreporting to be similar across the country (or something you can cross reference like hayfever and pollen count) and identify trends.

YinMnBlue Sun 12-Apr-20 15:23:23

Unless you have actually had a test and a confirmed diagnosis, then you know nothing. Which is kind of your point, isn't it?

Yes, I suppose so.

There is certainly an extremely debilitating virus in circulation round us that had all these symptoms: 7-14 days of very high fever, chills, sweats, muscle and joint aches and loss of taste and smell. I have never before been in a situation where so many families in my friendship and community network are all ill with this kind of illness at the same time.

Thanks other Pp: I hadn’t seen those links, and they aren’t being forwarded or distributed in our area, as far as I know. And tho’ I say it myself, I am very well connected! (In community involvement, voluntary sector networks including health).

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WingBingo Sun 12-Apr-20 19:02:13

NHS Digital are working on a data collection but it takes time.

user53175387 Sun 12-Apr-20 19:09:33

I do wonder if some of the people with symptoms aren't actually affected by psychogenic illness instead of covid. The circumstances would certainly seem to lend themselves to that occurring.

YinMnBlue Sun 12-Apr-20 23:08:08

User53 etc I would be very surprised indeed to find that my husband’s symptoms were psychogenic. He discovered once he was starting to recover that 75% of the people that had been at the event he had been at had gone down with the same symptoms, some ending up with the cough too, one in hospital.

The people and families I know who have / have had this are sensible calm people, and have been really ill. The term ‘mild illness’ for anyone not hospitalised doesn’t really give the impression of 7-14 days with relentless pouring sweat, shivering, temperature of 38 -38.9.

The teens and I have spent 3 weeks now wondering whether every quick episode of ‘feeling hot’ or hay fever cough is ‘it’. I could understand us, in theory, developing psychogenic symptoms, but we haven’t.

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