OpenVillage theme: citizen science in care

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#1

Some ideas for a theme at the OpenVillage event, work in progress.

I’d like to involve projects that are dedicated to citizen science in care. I think one interesting question to explore is ‘How do we solve resource intensive and technically complex issues in care as communities?’. I’d involve projects with different angles to have diversity, a broader view and hopefully validate observations/lessons. I’ve formulated some subquestions at the bottom of this post.

Projects that would fit into this theme:

  • Open Insulin: ambitious research project in biotech/pharma, both tough fields, to make an open source production protocol for insulin. Intellectual property, resources, timescale and expertise are all difficult and expensive. Moreover, a global collaboration is forming around the research. How do they manage to pull this off and what are their obstacles?
  • echOpen: open source and low-cost echo-stethoscope developed with a large group of volunteers
  • Belgian Ageing studies: highly participatory initiative that involves elderly people in the scientific study of the social aspects of ageing.
  • University Hospital Ghent: making legal documents for studies, admissions, operations, … much simpler and more readable for everyone, in collaboration with the stakeholders. Particularly children are largely left in the dark by the dense language, as well as people whose mastery of Dutch or English is limited. <More details as I look into it>
  • Future Footwear Foundation: hybrid research project at the intersection of anthropology, biomechanics and shoe design. 

Some program ideas specifically for Open Insulin:

  • KASK Laboratorium, a lab in the art’s school in Ghent, would like to do a call for students to develop an arts project/exhibition/show on the different themes of Open Insulin, to be shown at the event. They're now talking with an artist already working on those themes.
  • Through @dfko we got into contact with Claudio, a filmmaker living in Brussels. He was diagnosed with diabetes at 35, almost going into a coma. He’d like to contribute to the Open Insulin project by making a short film for us. We should definitely show it at the event if it goes through.

I’d also think it would be interesting to make the link with the other themes mentioned on the OpenVillage wiki by presenting our experience with the quest to secure long term existence of the lab space ReaGent. We have been setting up structures to ensure financial sustainability and independence, providing people with a meaningful job, while keeping the societal mission intact.

One aspect that is relevant and interesting to go deeper into is how we are figuring out models to the share a community space, the lab, and how these can be applicable to other initiatives.

This returns in some questions that we pose to ourselves for our local projects:

  • How do you ensure long term sustainability for your project?
  • How do you encourage change at policy level?
  • What have you learned about having citizens define and help advance your research project?

Thanks for the remarks and ideas so far!  As we flesh this out further over the next weeks: what are some questions you would like to have answers to?


Proposal for two OpenCare final events in October
Are you our next Community Fellow? (call closed)
Are you our next Community Fellow? Apply now! (call closed)
April 17-23: What we are doing to build the OpenVillage this week and how you can help!
Program proposals! (work in progress)
Open Insulin - Educational Outreach
Theme/Session proposal: Architectures of love - policy vs culture in creating the conditions for #opencare
Are you our next Community Fellow? (call closed)
#2

Some quick thoughts

Hey, timely idea. Nice to see how you tie ongoing conversations with the event.

  • I would say go specific more than broad: for example if you want to curate more sessions related to citizen science I say outlining broadly the theme should work initially (like above), but from past experiences articulating deep questions helps - it could mean getting in touch with each of the projects you have in mind and asking them to put forward their most important question they'd like to see answered. Those make for your key inquiries - sessions would aim to answer those. We can also check with @Amelia to see what topics, if any, are surfacing from the opencare discussions so far.
  • Re: call for students - the way we are exploring now with WeMake team is that we launched an opencare Maker in Residence Challenge, and all contributions come in publicly, as stories. Similarly past students from Berlin did the same, going from raw design questions posted online into developing products and a real public exhibition. The incentives differ though, it depends on what's in it for them to participate.
  • For citizen science, less technology oriented projects we could ask @ireinga who's working with Artshare if she knows someone at borders of disciplines who might want to partner up.

#3

Community call

Thanks for the input! I’m joining the call as well today to discuss this & more.


#4

It would be the best theme ever

I totally support this. It seems like a great learning opportunities. Also ties nicely into OpenCare 's fairness objectives, and our preoccupation with ethics.


#5

How about framing the session proposal as a challenge?

Hey You :slight_smile:

How do you feel about shaping your theme as a specific call for input and participation directed towards peers, e.g. people running the projects you mention above?

  1. The first thing is to have the “big” question: Which financially sustainable models are different open source and citizen science initiatives using to run shared community spaces and labs?

  2. The second thing is to have a clear goal for what you want to get out of your and others’ investment of time and effort in “your” part of the OpenVillage festival. If the event has been great, what would have happened by the end of it for you? Wild guess- you would have a number of tried-and-tested models that you could experiment with. Possibly having gotten help on developing your own project in peer-to-peer project clinic? Maybe having met others who’s skills you could use, or who could use yours? You get the picture :slight_smile:

3. The third thing is to have a clear ask of people whom you wish to engage. What do you want them to contribute…and how? Do you want them to do a talk or exhibit at the event? Do you want them to reach out to others whom they know/think can contribute and invite them etc.

4. Then maybe direct a question to the individuals whom you want to involve: “How are you doing [what you want to know] in your [open source- or citizen science project]”?

End with an invitation to do something and explain the steps for how.

This is an example we built for more general outreach for OpenVillagehttps://edgeryders.eu/node/6147

What do you think? feasible within the next two weeks maybe?


#6

Helpful

This was helpful, thanks :slight_smile:


#7

Reflections

Some thoughts have come to mind while synthesizing ideas and going through the stories on the platform again. (PS I’ve cleaned up the Open science and technologies channel a bit by untagging the projects that have no connection at all). Writing thoughts down for future reference as I rework the original text here with more concrete info, I admit they are kind of vague still.

  • There is a distinction between generating knowledge and creating prototypes/implementing solutions. The former can be classified as science, the latter could be called hacking. Both are interesting, but I reckon it's more interesting to focus more deeply on one for the OpenVillage track. I want to zoom in on science.
  • Generating knowledge has a more long term character than prototypes and a specific profile in terms of resources & technical complexity. An outcome is that results are uncertain, invisible or too far in the future to provide much incentive for a community to initiate research. This shows the role of government as an intermediary enabler of research for communities who would otherwise not make those high risk high reward choices on their own. This means we have to talk about policy.
  • It is tempting to commodify the generated knowledge as an attempt to hedge risks and move incentives to the short term. Result: patents, closed access, secrecy. This is where generated knowledge stops being property of the communities it is meant for. Therefore talking about IP (or better: intellectual rights) is central to this conversation of citizen science/open science/science as a community service, in my opinion. The boundaries of these terms gets blurry to the extent that it becomes obvious that we should really just talk about a better 'science', no adjectives, as a goal.
  • Other aspects to be covered that are more obvious: legal & admin, financial sustainability, implementation lessons, people & community roles.

Curious to hear people’s thoughts!


#8

knowledge and objects

just one thought:

commodification is a two edged sword - people like objects, yet marketing lies and easy access don’t necessarily reflect the actual cost to society of certain items (à la story of stuff).

Plus, it is so much nicer to actually make (or fix!) something oneself…

One nice compromise is to make designs reflecting new knowledge fully open source, so anyone could make it themselves easily, but also to provide an easy access for those who just want the thing…  (and also provide a fundraising opportunity for those who generated the output and can readily make the thing) We are thinking about doing this in terms of the ‘cheek cell chip’ idea for citizen science (looking into what leads to DNA damage in cells…).

Having something concrete provides a focus for community members, that is for sure…


#9

Knowledge commodities

Those are valid points. I can definitely testify to the commodification idea, we do it with workshops. These fun and informative sessions are ‘consumable’ for a broad audience. We commodifiy the experience, not the knowledge: we make the manual freely available online, people can do it at home or in different labs if they want to.

I wonder: is there a more widespread tendency of commodification in this “layer on top of knowledge”? Experience, curation, translation, … These things are becoming more and more valuable with exploding quantities of information and all the inefficiencies it brings with it.

What are the hurdles you see for the cheek cell chip?


#10

challenge!

yes, commodities sell…

outside that - there are many hurdles for the cheek cell chip, to look at DNA damage by two methods, but maybe we have ideas to surmount some of them already…

in one case, the fluor detection problem (which we would like to avoid), the challenge is simultaneously being addressed through testing of a DIY method for fluor detection (in context of Foldscopes), along with trials of less toxic dyes that might reveal the not only ‘micronuclei’ but ‘comet tails’…

the actual item - the ‘chip’ - with microcontroller links and electrodes for the e-phoresis step for the comets - is of course quite a hurdle, but we hope it should work…

Making sure truly quantative methods are used by people is another huge challenge, particularly given human reporting bias.  We think for workshops, working in pairs, with each partner counting the cells of the other, might help reduce this…  but, people are always people ;) - and if the Foldscopes work, people may really be able to do this outside of a workshop/biohacklab setting…

finally the data correlations, annotations, etc will be a challenge, but use of open python with the kobotool box for our water analyses now may help lead the way to make it easier for the cheek cell results (base-lines and ‘tests’)…

ciao for now!

Rachel


#11

Different service = different skills needed

What can be commodified and what not to maintain the open spirit but also reward the creators - Wordpress or Arduino being really good examples. Another one, but for open knowledge, is thenounproject.com where graphic designers who release their products under cc license can earn from purchases, community subscriptions, and royalties.

With “delivering” a science based service i.e. workshops in Winnie’s example - I find the issue of skills for delivery relevant: I imagine it’s not common that people who excel at doing the hard core research also excel at packaging it or relying on soft skills to take it out into the world. Similar in other domains… same with building and artifact vs making the sale.


#12

dit

yes, that is how the ‘do-it-together’ concept is of such great use…  many expertises coming together with shared long term goals.

looking forward!