Approval for Covid19 Open Survey

Governance Activity Reviews
#1

Hey everyone, during the past few months we have been working on launching an open & participatory survey to explore effects of the COVID-19 pandemic not only on physical health, but also its consequences on mental health and other factors.

To assess these impacts we will ask participants from around the globe to participate in a daily survey. It’s designed to be as short as possible and will take less than 5 minutes per day when nothing has changed for the participant and slightly more if something has changed (falling sick, being confined/deconfined, changes in life circumstances etc).

The project is an international collaboration that involves the Center for Research and Interdisciplinarity (Université de Paris, INSERM U1284), Notre Dame University, the Open Source Pharma Foundation and includes people from France, Australia, Canada, India, USA and Costa Rica. Consequently we’re planning to offer the survey and website materials etc in multiple languages. What sets our survey apart from other projects like it, is that we:

  1. will deposit of all of your survey data into your Open Humans account, so that you can use your own copy of the responses as you seem fit (e.g. explore them via notebooks!),

  2. will involve participants in adding new research questions and survey items to the survey as it evolves over time. To that end we created a sub-category on the Open Humans Forums for the survey, in which you can interact with us and become a part of the team: https://forums.openhumans.org/c/group-activities/covid-open-survey/15

Our survey has already been approved by the French Comités de Protection des Personnes (the regional ethics approval body) and the Institutional Review Board of Notre Dame University. See the letters of approval here:

We’d like to already ask for review at this stage, as the project website is basically done with only cosmetic changes to be expected (adding the logos of partners to the footer, extending the FAQ, adding more translations). The current version already works end to end for testing but we expect to restart the survey once we have approval for the activity (this will allow us to start with a fresh set of data), so following an approval here we would appreciate waiting to be set live to have the website fully ready to have a coordinated launch.

Thanks so much,
Bastian

Should this project be visible and available for all Open Humans members to join?

Please vote Approve or Deny , and/or comment.

Quick links

Project info

  • Title : Covid Open Survey
  • Managed by: Ariel Lindner, Bastian Greshake Tzovaras
  • Description: The OpenCovid survey is a 5 minute questionnaire created for people who want to help fight the COVID-19 virus from the comfort of their home. It consists of a short questionnaire, followed by a daily check-in on how you are feeling. A wide variety of questions are asked, some of which can be answered daily, others that appear on a rolling basis in order toalways keep it fresh!

Our goal? To better understand the virus’ transmission patterns and its effect on physical and mental health. We want to understand how the virus spreads, who it affects most, and how it impacts our daily lives. We hope this may guide future public health decisions and medication repurposing.

#2

This looks good to me. Approve.

#3

I got the impression that survey questions would be available so we could give you feedback on them, but I can only get as far as agreeing to the basic research itself. Maybe I’m not understanding what you want at this stage. 5 minutes a day for every day for two years is a lot - less is more.

I like the idea a lot, though. Approve.

#4

Aha! Got survey separately. It would be good to say time at start vs. daily time. I was unable to enter height - eventually able to do weight but never weight - just error message. You ask many questions about emotional state, but these are overlapping - less is more. Not quite clear from directions what I do daily, what I might change. Also, you don’t ask about masks - becoming quite a topic in USA - and is separate from social distancing. Hope this is useful.

#5

Hey @Francesblo, thanks for taking the time to go through our materials (and also thanks @Agaricus for looking over it)!

Indeed, 5 minutes per day sums up pretty quickly. We think that the actual time requirement per day will be lower as the daily surveys have 3-4 key questions that ask if there has been any changes and if no changes happened then one is already done with the whole daily check-in. And of course one doesn’t need to do it every single day (we offer a way to stop the email notifications for the check-ins for a while).

I think the questions about the emotional state still had a bug and that’s why there was some duplication of those going on (we had a meeting to finalize the questionnaire yesterday and noticed this too!)

For the masks: That’s a very good suggestions and definitely something we can add in the future version once we launch!

#6

I’m going to mark this as approved, but leave this topic open for further comments.

It’s been open for about two weeks, we have positive “approve” feedback from two folks that aren’t members of the study team, and also human subjects research review was done. Many thanks to @Agaricus and @Francesblo for weighing in!

@gedankenstuecke told me they’re hoping to “launch” imminently, so it’d be good to make sure this setting changed on the Open Humans site. :slight_smile:

Technically I’m also a member of the study team, although I’ve only had light involvement (partly due to timezones). So… I’ve gone ahead just now to test the setup.

These are bugs/details that I don’t think affect whether the project can be “approved” in Open Humans, but you might want to improve…

Bugs (?)

  • On the intake survey, I can’t enter my height in inches. It seems to fall outside some validator range (which was presumably calibrated for centimeters).
  • The email subject in the first email I got was [Open Humans Project Message] ! … was this correct? a placeholder?

Other notes

  • kind of weird to have a “slack.com” email as the contact email…?
  • annoying to answer lots of “no” to diseases just because I take regular meds (and what I’m taking meds for wasn’t included, not surprising – hypothyroidism & transgender – I don’t think it’s “relevant” but what is?)
  • list of medications gives oral contraceptive, but I have hormonal IUD – yes? no? I answered “no”?

I didn’t finalize the intake so this is as far as I got – posting what I have now.

#7

Thanks @madprime! That’s all very useful feedback :slight_smile:

I checked the bugs:

Other notes:

  • the website gives proper contact addresses, but for giving immediate survey feedback we thought it might be good to pipe it into a slack channel. But maybe we can alias/forward from a more normal address
  • Were those questions on diseases conditional on saying yes to medication? A fix for this could be to make it checkboxes for which diseases you have instead of asking for yes/no on each
  • Good question! I’m not sure how we can solve that best, maybe we can adjust that Q to “hormonal contraceptive”?
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#8

I fixed the issue of the subject. For some reasons the _() translation object when used in in the subject becomes truncated to the last character of the whole string. While the same does not happen when used for the body of the message. Either way, it’s fixed. And so is the validation for the inches :slight_smile:

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#9

Hmmm I guess maybe you could set up a forward-to-slack? or explain that (this gets immediate attention in our slack). I think I’d feel weird emailing an address like that, and mixes up communication on where you’re supposed to email the study

Yeah. Setting aside trans, I’ve been on levothyroxine since early 20s. It was actually asked about later in the meds section. “Check any that apply” would be easier, and more like typical medical intake forms. :slight_smile:

Yeah, or “hormonal contraceptive (eg birth control pills)” as there’s also implants, vaginal ring, injections, patch — cumbersome to list them all, but the most common example is good in case people don’t know the technical term