📗 Consent Process Manual

we are in the hands of @hugi and @owen. They are doing their best.

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@owen, as I understand it the issue blocking that should now be fixed.

Have been playing around with the webinar add-on.

there you have the “panelists” and the “attendees”.

The former have video, the latter can only watch. Was thinking if we could use that to make the consent easier for bigger event. e.g. we only collect consent from the featured speakers and if a “attendee” wants to raise their voice and ask a question/join the panel during the call we send them the consent info sheet directly and have them consent to it in the chat before promoting them to panelist?

@amelia, what do you say to that?

This works as long as you post this process and consent form/information sheet at least 24 hours in advance of the call (ideally more than that) so that the attendees have enough time to consider whether or not to participate based on the information in that form.

ok, in that case disregard that idea

To be clear, they don’t have to sign it then, but it needs to be accessible to them so they know that this will be the protocol!

There are unfortunately still issues with the form… I am trying to solve it and will let you know when it is working.

Using Edgeryders Forms is this the one we will be using? Can it include the consent funnel requirements in the template?

Changed the details in the templates for the participant information sheet to remove chatham house rules and include instead :slight_smile:
“We record the call, transcribe the recording, and post parts of it on our forum. We only mention you by the Edgeryders username you have selected. If you prefer not to be mentioned by username, please let us know in advance of the call.”

This way we can actually ping people with their usernames in the transcripts. Better for SSNA. Checked with @amelia.

@MariaEuler, I recommend changing this like you changed it in the Participant Information Sheet.

we also added

“If at any point you’d like your contributions removed from the online forum, just ask one of the admins and they will happily take it down.”
to the participant information sheet templates

this is about real live events.

How do we want to handle those? Just replacing it with the line with the one below seems wrong since recording real live events needs more care or is it fine? Should we record real live events?

“We transcribe recordings of the event, and post parts of it on our forum. We only mention you by the Edgeryders username you have selected. If you prefer not to be mentioned by username, please let us know in advance of the call.”

“If the event is recorded make sure to inform the participants before and during the event” ???

OK, team, this ongoing discussion about consent funnels is too disjointed. I’ve been pinged about it on too many different places on platform, with too many specific asks without enough context. @MariaEuler and I also agreed in our call today that it needs to be better systematised.

I suggest the following:

  1. Create templates for the different kinds of research data-gathering events that you plan to have (e.g. one for in-person events, one for online events, and one for interviews) and save them in this Consent Process Manual. This work is already well on its way in the manual. Update them consistently here.

  2. Any conversation around editing the general procedure should be had here and immediately implemented in the Consent Process Manual.

  3. Any conversation around the specifics of the meeting itself (these should only be minor tweaks to each form — if they bring up larger issues that you see potentially coming up in future events, they need to be discussed and documented here).

  4. Each specific instance of the form we use should be saved in the same place to create a database (e.g. a shared Google Drive folder, or a series of links on this Consent Process Manual, either way linked directly to this manual itself).

This way, we can make sure that we are building upon the work we have done instead of duplicating it, that we are doing things in an open, consistent, and well-documented way, and not making on-the-fly decisions about research ethics.

Pinging @alberto @nadia @johncoate @noemi @MariaEuler, and please ping anyone else who has been involved (@LauraRoddy, @andreja?)

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I reached out to the EU Regions Week Organisers to request how they handle their privacy and how we could include our funnel.

Their recommendation was:

7. Who has access to your personal data and to whom is it disclosed?

Access to your personal data is provided to the Commission staff responsible for carrying out this processing operation and to authorised staff according to the “need to know” principle. Such staff abide by statutory, and when required, additional confidentiality agreements.

The recipient of the data are the Communication unit of DG REGIO, contractors and The European Committee of the Regions.

In your particular case, we would suggest you to add in the session description a summary of how do you use the content of your session and insert an hyperlink to your policy, specifying this is only relevant to what happens during their session.

You may also share documents with participants by uploading them in the CMS. If you want to collect e-mail addresses for sharing documents with a restricted audience, you could also ask participants to either give their email addresses in the chat (but other participants can see) or you can tell participants they should write to a given address to say they want to receive the documents.

@andreja, if I supply you with the participant information sheet for that event could you make sure it get’s included there as they suggested?

They are already recording and publishing the sessions:

All sessions of the EWRC will be recorded by us and available on the website afterward.

Feel free to consult our privacy statement which is accessible from the link “Privacy policy” in the footer of the event web site: https://europa.eu/regions-and-cities/privacy-policy_en.

@amelia, could you check out this info sheet they use and see if we need more or if that is already covering the bases?

@andreja, can you edit the event description?

If yes I would suggest to just go with the base or what they already have and adding a link to our participant information sheet plus the note that by participating they are consenting to it.

Do we need their emails? Is it required for them to interact on the platform? If that is not required by the grant agreement or such, I think we might not need it.

The deadline for the changes in CMS is by today, so I already added everything regarding the workshop, speakers and the description. If you think that something additional is necessary I can try, but let me know what exactly do you want to add.

this is the final agenda, EURegionsWeek 2020_ER final Agenda.pdf (93.7 KB) so we can add it in the description or send me the attachment. There is no requirements from their side.

They gave me the answer only today, so that is very tight with the deadline for the CMS.
But do we need to add it in the CMS? Is having the link in the description enough? They already record and upload all of the sessions.

We would need to make a version of the Info sheet for this event.

For that I would need:

  1. the project reference code
  2. 2-3 Sentences about *“What is the purpose of this researcher” in the context of this event.

This is the version for NGI:

Any other changes necessary for the Regions week?

I am not sure if this is something important for your work, for the EU regions week and our part is not because everything is covered by the Commission’s rules - if something extra needs to be included we can add it, but the participants will only see the summary of the workshop before the registration so it should be there.

As a follow-up to my previous comment, here is at minimum what I need from anyone asking me questions about consent or ethics:

  1. What is the content itself? Is it a one-off event or call (and is this question/desire to use data in this way only relevant to this one event) or will this be an ongoing series where you want to do the same kind of storage, use, and analysis process in the future?

  2. What were the agreements in place with the participants before the event in terms of consent and use of data? (if event is in the future, what processes are you planning? if ongoing, what are participants used to?)

  3. What do you want to do with the data itself after the fact, and what are you hoping to get out of it?

I want us to be creating and documenting answers to these questions systematically, to also cut down on the amount of questions I get about consent without enough context that I’ve either a) answered before or b) can’t answer because I don’t have enough information or lead time. We need to build some institutional memory and practices.

A rule of thumb for ethics is that participants have to know beforehand what you plan to do with the data they give you and have agreed to it, at least 24 hours in advance (but preferably longer). So if you ask me “Can we do x” my first question will be “have you asked your participants if you can do that, and have they agreed to it, well enough in advance?”

Transcript should be its own new post, in my opinion.

Ideally a transcript would be separated into many different posts and comments, because this is going to be very difficult to code and create way too many co-occurrences. Is it possible to ask Kristof and Michal to post their parts as separate comments? we can create an account called “audience” potentially to capture those audience comments, or just have a community manager post those.