Covid-19 death records

200 views
Skip to first unread message

Thejesh GN

unread,
Aug 16, 2020, 4:49:37 AM8/16/20
to datameet
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?



Regards,
Thej

Thejesh GN ⏚ ತೇಜೇಶ್ ಜಿ.ಎನ್
http://thejeshgn.com

Hemant Desai

unread,
Aug 16, 2020, 3:30:37 PM8/16/20
to data...@googlegroups.com
Some records are necessary. However in absence of official communication, where can such data be sourced from.



--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+u...@googlegroups.com.
To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAABnYsUmQqZzoOfUV95Ptsy4VNE4xTwbzHL5MuW1-E-0d%3DS%2B%3DQ%40mail.gmail.com.

Thejesh GN

unread,
Aug 16, 2020, 3:44:38 PM8/16/20
to datameet
May be RTI?


Regards,
Thej

Thejesh GN ⏚ ತೇಜೇಶ್ ಜಿ.ಎನ್
http://thejeshgn.com
To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CALg8DoBkJrkcFgPBbTA_KMg1z7Y3oBj_hcnSArA87FPDwZMt%2Bg%40mail.gmail.com.

Nikhil VJ

unread,
Aug 17, 2020, 12:22:37 AM8/17/20
to datameet
Hi,

The hard way, but also the easy way, may be to collect data from people themselves, with all the obvious disclaimers brought in.
Towards that, setting up a data collection site might be a good prospect.
There, relatives of the deceased who want their stories to be shared in the hopes it may help others, can post and declare what they're sharing it as open data.

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.

There has been too much dirtying of the waters by official orgs. WHO is, I'm very sorry, not the most reliable source. The unipolar credibility worldview that has been adopted by us has been to our collective detriment. 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. So I will evaluate the effectiveness of lockdowns only on whether the non-lockdown place has bodies piling up or not as originally claimed. 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. And data visualization folks have, I'm sorry again, gone in for numbers orgy and it's feeling sick now.

There have been cases in other countries of people dying from motor accidents or gunshot wounds being marked as Covid-19 deaths, of official govt bodies having to retract and downgrade their own published figures after scandals erupted. There have been nurses speaking out about patients being put on wrong treatments that aggravated their conditions and no relatives being around them to stop it. There have been medical practitioners with equal or more experise than those on the authority side, and with actual success track records in treating covid-19 patients, questioning official policies. Instead of addressing the concerns raised, the tech giants have gone into full-on Church-vs-Galileo mode and exponentially increased the collective distrust by proactively censoring anyone daring to diverge from what CNN believes to be true. I would frankly trust authorities more when they earn my trust than when they dictate it.

If we want to help in even reducing the trust deficit and encourage alienated people to begin trusting official authorities again, I think qualitative voluntary data collection from kin of deceased and from survivors will be important. So that the anecdotes build up confirm the official line. And if they don't, well, it may help make sure we have better official sources later on.

--
Cheers,
Nikhil VJ
https://nikhilvj.co.in


To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAABnYsUxh3LbC%2BajLn_2Tdg9L2k00OCXiz6P0kzHT9XFA%3DNBMQ%40mail.gmail.com.

deepak srinivasan

unread,
Aug 17, 2020, 12:46:17 AM8/17/20
to data...@googlegroups.com
I have TamilNadu data collected here (may need some cleaning): https://github.com/medeepak/TamilNaduCovidData/blob/master/TamilNaduFatalitiesDataset.csv

But a number of states dont release this data.
@covid19indiaorg had created this wonderful tabulation of who gives what info

image.png


Sarabjeet Matharu

unread,
Aug 23, 2020, 3:23:08 AM8/23/20
to data...@googlegroups.com
Hi

I agree with Nikhil on many areas including the outsized impact this virus has had on our society. I say outsized, because the number of deaths due to COVID is far lower than the number of deaths due to road accidents in India (~1290 / day pre pandemic). 

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. 

Collecting stories of survivors, from families of the deceased and from the average person documenting the impact of this pandemic on everyday life might be of significant importance in the future. 

Regards,
Sarabjeet

On Mon, Aug 17, 2020 at 9:52 AM Nikhil VJ <nikh...@gmail.com> wrote:
To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAH7jeuMJE6FBaHOGssh-q2tWrZbn%2BGX%2BNwB73j9ukGU9MpQFjQ%40mail.gmail.com.

soumalya ray

unread,
Aug 30, 2020, 1:31:18 AM8/30/20
to datameet
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. 
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. 
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. 

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
 

Sarabjeet Matharu

unread,
Aug 30, 2020, 3:28:33 AM8/30/20
to data...@googlegroups.com
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

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+u...@googlegroups.com.
To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/2ea347e6-26f2-4d12-8452-355a86009181n%40googlegroups.com.

Thejesh GN

unread,
Aug 30, 2020, 10:39:55 AM8/30/20
to datameet
Let's do that. 

Can we add the details here


As of now it's publicly editable. May be  once we reach some level, I can make it public comment's only, to keep spam away. 


Regards,
Thej

Thejesh GN ⏚ ತೇಜೇಶ್ ಜಿ.ಎನ್
http://thejeshgn.com

Lalit Panigrahi

unread,
Aug 31, 2020, 12:08:52 PM8/31/20
to data...@googlegroups.com, Siba Das, ashis dash
Very good idea. I would like to add one more column to the list of form fields like designation instead of notability (in the screengrab).

Date of death
State
District
Gender
Age
Name (not sure of this, due to privacy. We can discuss)
Reference link

image.png

Best
Lalit Panigrahi | Linkedin





To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAABnYsWJbqM%3Dm0zdisEGNPLBjtKObwjgioG2%3DeSkgrMxcOtB%2BA%40mail.gmail.com.

Sarabjeet Matharu

unread,
Sep 1, 2020, 5:44:59 AM9/1/20
to data...@googlegroups.com
Hi

I've put together a short document that introduces the project, motivation, objectives and the questionnaire approach. 

At this stage, I suggest we go through the introduction / motivation / objectives and arrive at a consensus. 

The questionnaire has been divided into 4 sections that can help describe patient experience from when they find out about the infection to when the whole ordeal is concluded. I suggest we freeze on the topics / data we want to cover over the next few days. 

Once we have a consensus on the above we can figure out how to deploy the questionnaire and next steps depending upon who all would be interested in working together on this. 

Attaching a copy of the word doc here for quick reference. 

Regards, 
Sarabjeet

To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAE%3DhikS6bsmREOmKXrhVjjy_88BZmxDhs5U5zgdwL4GeVYGUgQ%40mail.gmail.com.
DataMeet - Stories of the Pandemic.docx

Thejesh GN

unread,
Sep 1, 2020, 5:55:59 AM9/1/20
to datameet
Sarabjeet,
Looks good. Can you make it a google doc or hackmd, so we can comment on it easily.
Thej
--

Thejesh GN ⏚ ತೇಜೇಶ್ ಜಿ.ಎನ್
http://thejeshgn.com
GPG ID :  0xBFFC8DD3C06DD6B0


To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAPW0H0L2N7H6MUbStpWTt09CYgDcc1trd38hwHQ9oe7WjEx2rg%40mail.gmail.com.

Thejesh GN

unread,
Sep 1, 2020, 5:57:22 AM9/1/20
to datameet
I see that its already there :)
Sorry.

Thej
--
Thejesh GN ⏚ ತೇಜೇಶ್ ಜಿ.ಎನ್
http://thejeshgn.com
GPG ID :  0xBFFC8DD3C06DD6B0

Thejesh GN

unread,
Sep 2, 2020, 1:13:34 AM9/2/20
to datameet
Sarabjeet,
I went through it. It looks great. I have added some comments.

How do we go about it.

- Make it easy for people to submit (Translations and making form easy to fill)
- Reduce spam (if any) and validation

Technically it can go at

Thej
--
Thejesh GN ⏚ ತೇಜೇಶ್ ಜಿ.ಎನ್
http://thejeshgn.com
GPG ID :  0xBFFC8DD3C06DD6B0

akhilks...@gmail.com

unread,
Sep 2, 2020, 9:46:36 AM9/2/20
to data...@googlegroups.com

Hello everyone,

 

This project does sound really interesting, especially if we are able to get stories/experiences of people/survivors from more rural parts of the country. I am interested in being part of this.

 

Warm regards,
Akhil

 

Best

Lalit Panigrahi | Linkedin

 

 

 

image002.png

Lalit Panigrahi

unread,
Sep 2, 2020, 9:47:14 AM9/2/20
to data...@googlegroups.com
Hi Sarabjeet and Thejesh,

The context and questions have come up solid. I see two KPIs for this exercise: Quantity and Quality of responses we are going to generate.

But from a responded point of view, it seems overwhelmingly big to share. Hence, my suggestion is the break it to two parts as follows:
  • Part one -> Intro+ Context
  • Part two -> a concise questionnaire - For bigger Scale of stories as we will have higher response rate
  • Part three -> Other itemized questions that are detail oriented. - For better Quality of stories as we will have more substance but lower response rate
Once you both think, this is a good idea, I can add my inputs.

Best
Lalit Panigrahi | Linkedin


To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAABnYsWHirHsuz5-nvNn6Vzy9Aos%3DvuM17MJvC0CAKEX4ngS5Q%40mail.gmail.com.

Sarabjeet Matharu

unread,
Sep 3, 2020, 1:05:05 AM9/3/20
to data...@googlegroups.com
Hi Guys, 

Thank you for going through the doc and sharing your comments.  

It may be a good idea for a few of us to first administer this questionnaire by interviewing 5-10 patients + families. 

Doing this will allow us to better understand the patient experience. We can use their responses to create a standard questionnaire that can be rolled out digitally. 

I see two kinds of stories being created - 
  1. One set can emerge from our initial interviews with patients + families. These can be our 'hero stories' and more detailed / better media etc. 
  2. The second type can be based on the responses we get from rolling out the digital questionnaire. This can be automated / data based which we can visualise to give a broader overview of the ongoing situation. 
The interviews will require a few of us to reach out to patients etc. and discuss the questionnaire with them. It might be easier to reach out to COVID patients who are friends & families of people in the Datameet community for the interviews. 

I can do one set of interviews for Bombay.  Do let me know your thoughts on how you'd like to proceed. 

Best, 
Sarabjeet

To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAE%3DhikSJNB61Tsk5rLiC0oNUTCzmOqjtJPB8YO3qFxJcyEsP%2Bg%40mail.gmail.com.

Bidhu

unread,
Sep 3, 2020, 9:09:04 AM9/3/20
to data...@googlegroups.com
Dear Sarabjeet,
It would be wonderful to collect data from families. Given that this involves interviewing a human subject, I suggest taking approval from an institutional review board to make sure there are no ethical violations in the process of data collection.

Regards
Bidhu


To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAPW0H0LHReL4wV_kvGOxOMceqNsr%3DTpeDP4eJbHnsz7sU5%3D-JA%40mail.gmail.com.

Lalit Panigrahi

unread,
Sep 3, 2020, 9:09:22 AM9/3/20
to data...@googlegroups.com
Done.

I can do two interviews and get back.
 
Best
Lalit Panigrahi | Linkedin





To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAPW0H0LHReL4wV_kvGOxOMceqNsr%3DTpeDP4eJbHnsz7sU5%3D-JA%40mail.gmail.com.

Lalit Panigrahi

unread,
Sep 3, 2020, 2:38:38 PM9/3/20
to data...@googlegroups.com
Dear Bidhu,

Appreciate your concern! However, while at the test stage, let's not worry about all this. It would delay our learning.
 
Best
Lalit Panigrahi | Linkedin





To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAD5urwq_RmsgZZLn96LXEVq1H96Ny%2BtT0f4XTC8wzBbHiNQ8cA%40mail.gmail.com.

Chaithra Navada

unread,
Sep 3, 2020, 2:38:51 PM9/3/20
to data...@googlegroups.com

Hi,

Thank you Bidhu for bringing the ethics aspect up. I want to put across some reservations I have on this project.

[TL/DR: We are dealing with sensitive personal experience, possibly traumatic. We need to involve qualified persons (in psychology/related fields/experienced researchers in such a domain) who can help us draft this project.]

I do not know if anyone here has already looked into these aspects, or has experience/training on such cases.

As I understand this is an attempt to bring out not just quantitative data, but also narratives. This is a welcome project as it tries to document the pandemic as a social experience from ground-up. But I think we still need to gain clarity on the objectives. That said, my concern is the following.

Dealing with a disease like this is an extremely traumatic experience to both survivors and family. In case of death, this even more so. While acting on such an immediate basis, we need to think through and account for the process of dealing with grief that the prospective respondents here are undergoing. By immediate I mean that their experience is in the recent past, and we have no idea of the coping process. Long periods of quarantine, dealing with isolation, changed work/family circumstances, financial impacts can have effects that we need to acknowledge for the purpose of this project

It is important to identify possible stress/trauma that such a research can put/spark on the respondents. This can be particularly true when death is involved. Now while we are collecting few seemingly objective data - like data on health/treatment details, these​ are not separated from experiences. I realise there is option for people to not participate. In case of those who choose to continue, sensitivity to their situation needs to be ensured. In case of interview approach, we need to design the questions/delivery style very careful for the same reason. Open ended method, as suggested, is one way to make this possible.

Now, I have not been trained in or exposed to similar circumstances. But I really want us to give this a serious thought before proceeding.

I hope we do have in-house expertise on these aspects, and that they have been put into use. If not, we should start a discussion and identify how we can address these concerns.

Thank you
Chaithra


To unsubscribe from this group and stop receiving emails from it, send an email to datameet+unsubscribe@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+unsubscribe@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+unsubscribe@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+unsubscribe@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+unsubscribe@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+unsubscribe@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+unsubscribe@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+unsubscribe@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+unsubscribe@googlegroups.com.
To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAD5urwq_RmsgZZLn96LXEVq1H96Ny%2BtT0f4XTC8wzBbHiNQ8cA%40mail.gmail.com.

Thejesh GN

unread,
Sep 3, 2020, 3:42:07 PM9/3/20
to datameet
@Chaithra: All valid points. We are not a traditional organization, so this email list is our in-house. So I am going to appeal to all of you. But in case if you know anyone whom we can approach. It would be great.

@Bindu:  Thank you. We don't have an IRB on/at this email. Can we take external help? Are there any organizations that can help us? Can you guide us?

@All - Is there anyone on this email list who has, expertise on these aspects? If yes can you have a look. If not suggest whom we can talk to?


For all the people involved.
- DataMeet is a public group. Everything you talk here is public and is probably going to be archived forever, because its internet.  Please do be aware of that.
- Everything we produce is also going to be public and some form of open license (ODB, CC etc). It can be cause of concern to both researchers and participants. Be aware of that.


Also remember we have only one rule - BE NICE.

And TLDR of DataMeet Community Code of Conduct : We have a few ground rules that we ask people to adhere to. This code applies equally to founders, mentors and those seeking help and guidance. Be nice to everyone involved. Be friendly and patient. Be respectful. Be considerate. Do not spam. Be careful in the words that you choose. Agree to disagree. Contact us at ad...@datameet.org if you face any issues.

Regards,
Thej
--
Thejesh GN ⏚ ತೇಜೇಶ್ ಜಿ.ಎನ್
http://thejeshgn.com
GPG ID :  0xBFFC8DD3C06DD6B0

To unsubscribe from this group and stop receiving emails from it, send an email to datameet+u...@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+u...@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+u...@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+u...@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+u...@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+u...@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+u...@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+u...@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+u...@googlegroups.com.

--
Datameet is a community of Data Science enthusiasts in India. Know more about us by visiting http://datameet.org
---
You received this message because you are subscribed to the Google Groups "datameet" group.
To unsubscribe from this group and stop receiving emails from it, send an email to datameet+u...@googlegroups.com.
To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAMqj7mde82vgRGR%2BbNb%3DQUA4i1GXPGbZE8S3ifo7Hi90mOGygw%40mail.gmail.com.

Piyush Kumar

unread,
Sep 3, 2020, 11:55:15 PM9/3/20
to data...@googlegroups.com
With respect to IRB, there's an organization called Sigma Research and Consulting (New Delhi) that provides ethical approvals for such studies.

In case anyone wants to check this: http://www.sigma-india.in/why-sigma/

Regards,
Piyush

To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAABnYsVk_9%3DVnbNWfVcTFXf6xCby80zY_3jZyb20ep%2BKa4KtCA%40mail.gmail.com.

Sarabjeet Matharu

unread,
Sep 4, 2020, 6:22:02 AM9/4/20
to data...@googlegroups.com
Hi Guys, 

Thank you for sharing your perspectives and calling out potential concern areas. 

I agree we'll definitely need a privacy policy and some sort of consent from the study participants before we can publish anything online. My experience largely lies in the marketing domain, and while I've been part of research studies, I haven't dealt with IRB related clearances. 

It'll be great if someone on this group has prior experience in this area and can help address these concerns. Would someone be interested in driving this area of the project?

Parallelly, I'll reach out to colleagues in the marketing / research fraternity and see if we can get some more perspective. 

Regards, 
Sarabjeet

To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAFtOtdtZP5jHOPO61KfUBtRbtX7amCA_sGJ6Y2d%2BdCvYd1b_Yg%40mail.gmail.com.

Bidhu

unread,
Sep 4, 2020, 9:27:57 AM9/4/20
to data...@googlegroups.com
I spoke to Dr. UV Somayajulu and explained to him the study objective and about the group. He suggested given that there is no formal registration of the group, either 2/3 individuals should come together with one of them being the main lead and submit the research and ethics protocol to SIGMA IRB. The protocol would include the detailed recruitment process of the study participant, steps to ensure the privacy and safety of the study participants, consent form, and study tools. The IRB would also charge a fee of 50000 to give approval. In case, we are not able to do in this detail, he suggested at least having a detailed consent form explaining the study objective, harm, and risk associated with participation, and the contact number of the study lead. The consent form should also clearly mention how the data from the research will be used and what are safeguards the research is taking to ensure the privacy of individuals participating in the study. Only those consented should be interviewed. Apart from the consent form, there should be a referral list on counseling services that can be provided to participants who are in distress. Dr. UVS has agreed to review the consent form to make sure all components are incorporated as per ICMR ethical standards.

Regards
Bidhu


On Fri, Sep 4, 2020 at 9:58 AM Bidhu <bbmah...@gmail.com> wrote:
Yes, I know the IRB chair of Sigma. I will call him to find out the process in detail and update you all.

Regards
Bidhu
Population Council
B86, 2nd Floor,
Defence Colony
New Delhi, India
Tel: +91-9811137484
Email:bbmah...@popcouncil.org


On Fri, Sep 4, 2020 at 9:25 AM Piyush Kumar <psh.ku...@gmail.com> wrote:
To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAFtOtdtZP5jHOPO61KfUBtRbtX7amCA_sGJ6Y2d%2BdCvYd1b_Yg%40mail.gmail.com.

Bidhu

unread,
Sep 4, 2020, 9:28:05 AM9/4/20
to data...@googlegroups.com
Yes, I know the IRB chair of Sigma. I will call him to find out the process in detail and update you all.

Regards
Bidhu
Population Council
B86, 2nd Floor,
Defence Colony
New Delhi, India
Tel: +91-9811137484
Email:bbmah...@popcouncil.org


On Fri, Sep 4, 2020 at 9:25 AM Piyush Kumar <psh.ku...@gmail.com> wrote:
To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAFtOtdtZP5jHOPO61KfUBtRbtX7amCA_sGJ6Y2d%2BdCvYd1b_Yg%40mail.gmail.com.

bob quest

unread,
Sep 4, 2020, 11:02:56 AM9/4/20
to data...@googlegroups.com
Hi

What about data anonymization. And yes consent will be required as this is sensitive data. Also we should think in how much depth we need to go into the data.

Regards
Priyabrata Dash

To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAD5urwrDUUjsuxwkdCeY0JM2P8Q1Pb2Qfk2qrwkYbs3wcchRww%40mail.gmail.com.

Sarabjeet Matharu

unread,
Sep 6, 2020, 1:58:12 AM9/6/20
to data...@googlegroups.com
Hi, 

Bidhu, thank you for following up with Sigma IRB on the process. 

Perhaps we can start by creating the study document and the consent form which will be required to move forward. Once we have this ready, we can get some feedback and tackle the funding / registration issue next. 

I suppose we will need the following areas in the research proposal (as outlined in the email):
  1. Study Scope & Objectives
  2. Data Privacy & Safety
  3. Possible Harm & Risk to Study participants
  4. Recruitment Process
  5. Consent Form
  6. Counselling Services / Referral list
I've discussed our project with a social sciences advisor who has previously done such research and a colleague who is a lawyer. They have suggested the following resources that can help :
  1. Research Ethics - https://en.itu.dk/research/research-ethics-and-integrity
  2. BioEthics - https://www.niehs.nih.gov/research/resources/bioethics/whatis/index.cfm
  3. Research Guidelines - definition of informed consent etc. (document attached here)
I can pitch in to develop the research proposal, however there are areas like data privacy / risk assessment that may benefit from the experience of other members in the community. 

Would members be interested in taking up some of the sections of the research proposal?

Best,  
Sarabjeet

To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAOptu3%3D797xu-%3DRKfWeQsHwykHpbTXYWqKMCtPTVoD37t0eDuA%40mail.gmail.com.
Guidelines.pdf

Bidhu

unread,
Sep 7, 2020, 2:01:30 AM9/7/20
to data...@googlegroups.com
I have attached a template on consent form and the protocol template for SIGMA's IRB. Please let me know if you need any clarification or support in preparing these documents.

Regards
Bidhu
Population Council
B86, 2nd Floor,
Defence Colony
New Delhi, India
Tel: +91-9811137484
Email:bbmah...@popcouncil.org

To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAPW0H0KoMMuri5hoy%2B9a4Zp1%3D%3Dc%3DGzfk%2BWGzMfrHsQdDaTdmZA%40mail.gmail.com.
Adult-Consent-TEMPLATE-REVISED-2019.docx
IRB Standard Application form V7.doc

Sarabjeet Matharu

unread,
Sep 9, 2020, 5:03:15 AM9/9/20
to data...@googlegroups.com
Thanks Bidhu. 

Will go through and share this weekend. 

Regards, 
Sarabjeet

To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAD5urwoYOG4bcvrwWmxV6Qn%3DS60_HBmaUDaKJ5NrMKh9Qavo0A%40mail.gmail.com.

Thejesh GN

unread,
Sep 16, 2020, 4:55:49 AM9/16/20
to datameet
Just today I read a response from Government in parliament about the deaht of migrants while traveling[0]. Their answer said they don't have any data on it.

At this point even with all the shortcomings[2] the data gathered and cleaned by DataMeet and RoadScholarz seems to be only source[1].

Proving again the community collected, cleaned and archived datasets are very important. And hence this specific "Stories of Pandermic" project too.

So taking this furher
- Can the academic organization like Azim or Ashoka can help us with IRB, anyone here? Do they even engage with communities like ours?
- If not, can we get a community discount from Sigma to do the IRA. I will try and crowdsource money from friends and family to pay for IRA
- We do have a core volunteers group. I will ask them to review the notes and comment on it. They will in a way represent DataMeet community
- Most important thing to remember is unlike other projects. Everything we do in this project will be published in open (no login). And hence we will ask only those things that we can publish, if we can't publish we wont ask or collect.

Let me know,
Thej






Thej
--
Thejesh GN ⏚ ತೇಜೇಶ್ ಜಿ.ಎನ್
http://thejeshgn.com
GPG ID :  0xBFFC8DD3C06DD6B0

To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAPW0H0%2Bxu%3Db8-AvOopn3bgX98SJ12HvmVHFEQ_8iFd_qtjKCNA%40mail.gmail.com.

Sarabjeet Matharu

unread,
Sep 16, 2020, 6:39:54 AM9/16/20
to data...@googlegroups.com
Hi Guys, 

I've been caught up over the last week. I'll try and put this basic document together sometime in the next two days. 

Regards, 
Sarabjeet

To view this discussion on the web visit https://groups.google.com/d/msgid/datameet/CAABnYsUOaWcF6rn%2BU3_WrbO7RHk66x%2BLc1xBo7xsw8cOP4OvkQ%40mail.gmail.com.

Sarabjeet Matharu

unread,
Sep 19, 2020, 12:48:56 PM9/19/20
to data...@googlegroups.com
Hi, 

I'm attaching the consent and application forms for the group to go through. My inputs on the adult consent form are highlights in red for clarity. 

There are some areas where members with information / data security experience can add their inputs. 

Bidhu - do go through both docs and share your thoughts. 

Regards, 
Sarabjeet
IRB Application Form _190920.doc
Adult-Consent-TEMPLATE-REVISED-2019.docx
Reply all
Reply to author
Forward
0 new messages