How does research treat underrepresented minorities?

[mozfest-bot]

[ UUID ] 31bba42f-0bfb-4432-83e2-6c8b00c9ba7e

[ Session Name ] How does research treat underrepresented minorities? [ Primary Space ] Open Innovation [ Secondary Space ] Digital Inclusion

[ Submitter's Name ] Athina Tzovara [ Submitter's Affiliated Organisation ] University of Zurich, Switzerland [ Submitter's Github ] @aath0

[ Additional facilitators ] Bastian Greshake Tzovaras,

What will happen in your session?

Most of the existing studies in medicine or psychology are governed by a divide between researchers and participants, often resulting in an othering of minority groups, which may not feel well represented. In our session we want to design a questionnaire to evaluate how these, often vulnerable, populations view the research done on them, and brainstorm on how members of underrepresented minorities can be better integrated in all steps of scientific studies, to foster inclusion, representation and lead to better science. We want to launch a discussion, where we hope to hear from everyone whether studies performed on their communities are representing them well and how this could be improved.

What is the goal or outcome of your session?

The goal is to get a first insight into how members of underrepresented minorities perceive research done on them. To this aim, the outcome will be a collectively designed questionnaire that will be addressed to vulnerable populations and will quantify the extent to which they perceive research done on them as useful and respectful. The long term goal is to use collectively built knowledge to eliminate the artificial divide between researchers and research participants and identify ways and interactive platforms that can bridge the two.

If your session requires additional materials or electronic equipment, please outline your needs.

Some paper and pens for the people to take notes.

Time needed

90 mins

[KirstieJane]

[ Facilitator 1 Name ] Athina Tzovara [ Facilitator 1 Github ] @aath0 [ Facilitator 1 Twitter ] :question: [ Facilitator 2 Name ] Bastian Greshake Tzovaras [ Facilitator 2 Github ] @gedankenstuecke [ Facilitator 2 Twitter ] @gedankenstuecke

Requirements

[gedankenstuecke]

Thanks for the update! 🎉

A quick update: It’s Athina Tzovara but Bastian Greshake Tzovaras (c.f. Wikipedia on the quirks of Greek surnames ☺️)

[KirstieJane]

Ooooooh - I had no idea! I thought it was just a typo. SO SORRY! 😞

You learn a new thing every day 🎓!

[gedankenstuecke]

No harm done! ☺️ Ever since my name change I’m super paranoid about getting my own name wrong due to it. 😂

[aath0]

A quick update on the description of this session, to merge it with session #198. I hope that works! ☺️

What will happen in your session?

Usually, the design of scientific studies is done with zero feedback from (potential) participants. In this session we will discuss the experiences of members of underrepresented minority groups when research is done orthogonal to their wishes. We will start with some persona-driven role playing and collaboratively evaluate whether more extensive participant feedback, before the study starts, is important. Then, we will collectively design a questionnaire, to evaluate how research participants perceive existing studies that directly concern them. We hope to launch a discussion, and hear from everyone whether studies performed on their communities are representing them well, and examine crowd-driven ideas on how every step of the scientific process can be informed through participant feedback.

What is the goal or outcome of your session?

The big question is: can participant-driven study design and approval lead to better science? This session should be a first inquiry into whether crowd-driven feedback is useful, feasible and how such a system could work. This will enable the further prototyping of systems that enable participatory and democratic science.

If your session requires additional materials or electronic equipment, please outline your needs.

Ideally a projector to show some initial slides with the session idea, but could do without. Plus some space with pens & paper for writing notes and post-its for collecting ideas.

[kaodro]

Hi @aath0 @gedankenstuecke , my name is Kasia and I work on Mozilla’s Internet Health Report. At Mozfest we will be present with an “Internet Research Hub” #618 (last comment) - an easy-going, cozy space for discussions and networking both with us about Internet Health and among researchers themselves.

We also invite anyone who does work in an Internet research field to sign up and present their work at a couple of open display tables we will have in the hub. If you would like to present something in the Hub in addition to your official session, let me know! We will promote these sessions throughout the festival. You can sign up spontaneously with pen and paper on site or if you would like to save a spot beforehand, drop me an email at kasia@mozillafoundation.org with a short description of the session.

In any case, I would like to invite you to pass by the hub and say hi. We will start with an informal "Research and coffee grinder” get-together at the beginning of the festival where people can get to know each other. Space and exact schedule for the Hub are still being decided and I will update you once we know the details. Hope to see you there!

[gedankenstuecke]

Hey @kaodro! Thanks for getting in touch. We're not yet 100% sure of how much we'll already have ready to present before our session, but we'll keep it in mind and be in touch! Thanks for offering that opportunity! 👍