To capture experiences of patients and their families with COVID, we could create a simple questionnaire that can be rolled out digitally to those who would want to participate.
We can create stories that document their experiences which can be subsequently published online. I'll be happy to put together a basic questionnaire which we can discuss and deploy. In case there are members who would be interested in taking this up, please let me know and we can collaborate on a separate thread (so we dont spam the whole group). Regards, Sarabjeet On Sun, Aug 30, 2020 at 11:01 AM soumalya ray <[email protected]> wrote: > Sharing some comments in-line. > > On Sunday, August 23, 2020 at 12:53:08 PM UTC+5:30 sarabjeet wrote: > >> There has been a complete breakdown in how daily life has progressed >> during this time and the fragility of our social systems, administration >> has come out in stark contrast. >> > > not only that, regular health service delivery (including antenatal care, > immunisation, DOTS under RNTCP) was affected as well, the extent of which > is unclear. if data could be collected on this, it'd really be helpful. > > On Mon, Aug 17, 2020 at 9:52 AM Nikhil VJ wrote: >> >>> Hi, >>> Additionally, I'd also really like to see data collection from Covid-19 >>> survivors. Particularly, what helped in their case, in whatever level of >>> detail they want to share. >>> >> > availability of such data will really be helpful; but for being > meaningful, this should contain some bio-chemical and genetic > characteristics as well. > > >> >>> There has been too much dirtying of the waters by official orgs. >>> >> > i do not understand this. could you explain this please? > > >> WHO is, I'm very sorry, not the most reliable source. >>> >> > why? > > >> The unipolar credibility worldview that has been adopted by us has >>> been to our collective detriment. >>> >> did not understand even a little bit. > > >> Whether lockdowns worked at all or not is under question because places >>> that didn't impose strict lockdowns like Sweden, Japan, South Dakota >>> haven't turned into giant body-piles (and no, I will not accept an A-to-B >>> numbers comparison - the rationale for lockdowns was that if not, we will >>> have mass die-offs. >>> >> > accepting this is of course your choice. however, sweden has a higher > mortality rate compared to adjacent countries. > link: https://www.bbc.com/news/av/world-europe-52757471 > of course, the interesting thing is that among elderlies, many died > outside ICU set up rather than being admitted. role of predicted > probability of survival cant be ruled out completely. so, the doctors were > forced to play a role of judge as well. > link: > https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciaa864/5866094 > instead of lockdown, sweden has followed a different form of social > distancing - self isolation. In case of Japan, as well, it was hypothesised > that their habit of wearing masks and maintaining personal hygiene might > have played a role initially. however, in recent past, Japan is also > showing an increase in case. > i was not aware about south dakota. need to have a look in this. thanks > for pointing out this. > > So I will evaluate the effectiveness of lockdowns only on whether the >>> non-lockdown place has bodies piling up or not as originally claimed. >>> >> > it sounds very harsh as a measurement indicator for lockdown. lockdown is > one of the component of social distancing. it might be draconian; but, is > it not needed for our population. even after this draconian measure was > applied, how many people actually stayed inside? that needs to be taken > into consideration as well for measuring it's success. > we should understand lockdown, one of the social distancing measure, was a > preemptive measure. it was taken when much was not known about the > patho-physiology of the virus. while measuring the success or failure of > lockdown, we should consider a lot of what-if questions. if the disease > actually had a case fatality rate of 5%, do we have so many hospital beds > then? > during the lockdown, have we increased our hospital beds? have we > converted trains into isolation beds? have we invested the time into > capacity building measures? > to quote Amos ELon - "Hindsight is not necessarily the best guide to > understanding what really happened. The past is often as distorted by > hindsight as it is clarified by it." > > >> Anything else - doesn't justify forced lockdowns that we knew going in >>> will kill a lot of people too and irreparably push entire generations into >>> poverty and leave a lot more people without the resources to protect >>> themselves from the disease). Hospitals and agencies that have been given >>> incentives to report as many Covid-19 cases and deaths as possible, have, >>> predictably and unfortunately, done what were incentivised to do. >>> >> > i am completely unaware of any incentive scheme launched by Government of > India for reporting covid-19 cases/deaths. could you kindly share some more > lights on it? > > >> I would frankly trust authorities more when they earn my trust than when >>> they dictate it. >>> >>> reasonable argument. > > On Sun, 16 Aug, 2020, 2:19 PM Thejesh GN wrote: >>>>> >>>>>> Dear All, >>>>>> >>>>>> 49k+ people are dead due to COVID19 in India, no one knows who they >>>>>> are. In a year we will forget their stories and it will be just one >>>>>> single >>>>>> number. I was wondering if we can collect >>>>>> >>>>>> >>>>>> Date of death >>>>>> State >>>>>> District >>>>>> Gender >>>>>> Age >>>>>> Name (not sure of this, due to privacy. We can discuss) >>>>>> Reference link >>>>>> >>>>>> - So that we have enough data to analyse >>>>>> - They are recorded publicly just like deaths of soldiers in war or >>>>>> attacks >>>>>> >>>>>> >>>>>> Deaths and births are usually public documents. But i don't see MoHFW >>>>>> publishing this data. Do you have any idea how to go about? >>>>>> >>>>> > ICMR has initiated the process of preparing a National Clinical Registry > for C0vid-19. Although, i am not sure if this will be available in the > public domain. > link: https://twitter.com/ICMRDELHI/status/1291568848475262976 > > regarding your suggestion about inclusion of name, that should not be > done. in my experience, stigma is far more in this compared to any other > diseases, even HIV. > > regards, > soumalya ray > > > -- > Datameet is a community of Data Science enthusiasts in India. 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