Agora on ISNTD festival - community engagement through ecosystesms of disease

We’re preparing a proposal for Edgeryders to facilitate a workshop/ talk/ panel debate at the ISNTD Festival in London later in March (special thanks to @winnieponcelet for seeding).

ISNTD is the International Society for Neglected Tropical Diseases, which is ultimately “a multidisciplinary global platform to an international network of individuals working in the fields of Neglected Tropical Diseases, diseases of poverty and global development.”

They’re interested in us sharing some of our work on community engagement and community building through science to create ecosystems of care.

I thought I’d open it up if anyone here has ideas they’d like to propose, before I draft up a simple description. In particular we thought @woodbinehealth and Open Insulin @dfko @ramykim could have some thoughts…? We also wondered if of interest to you @nabeel_p

One idea that’s emerged is to experiment with an analogue version of the edgeryders platform in the form of a panel debate - an agora - such that our presentation takes the form of our work…

Got to finalise this by Friday.

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Anique are you looking for high level ideas about engagement & building through science e.g., the international collaboration for Open Insulin, or more on-the-ground strategies that say, Mboa is working on to engage with his community?

Alternatively, were you looking for ideas for presenting the info e.g., agora? Thanks! I can respond throughout the day today.

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@ramykim very open… just wanted to throw it out there to see who and how people may want to contribute - aka Edgeryders’ collective intelligence - and will compose a presentation based on what comes. Feel free to simply share a scattering of thoughts that come to mind how they do. Although if you’d like what some call “an enabling constraint” I’d say open science techniques to engage communities in building resilient and healthy ecosystems (this could span international cooperation as in OpenInsulin to @thomasmboa’s strategies) :blush:

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Great, that’s a start! I will take that as license to brain-dump here then :wink: Of note, I will speak from personal observation & talks with the larger group of Open Insulin Project collaborators, but would not say that I speak for them. So @winnieponcelet @dfko @thomasmboa please feel free to jump in too!

I think a big theme would be around having a global strategy for local production for Open Insulin. What we have talked about here and in other fora is the idea that localized production would be key in spreading the technology or group intelligence, that the scientists and others are working on across physical and cultural boundaries. The collective knowledge, the means of production, can be seen as capital that can be used appropriately in hyperlocal economic and cultural contexts. What this allows for is creating unique meaning to how the technology is to be deployed without any one person or entity to the actual mode of distribution, which is crucial to open science. No one can horde the technology in an ideal sharing situation.

Here is a quote from a post that I read recently that I have been thinking about a lot as to the power of the open insulin project (really good read, especially midway, about cosmolocalism):
“Fablabs, makerspaces, emerging global knowledge commons… These are but some of the outcomes of a growing movement that champions globally-sourced designs for local economic activity. Its core idea is simple: local ownership of the means to produce basic manufactures and services can change our economic paradigm, making our cities self-sufficient and help the planet.”
source: Cosmo-localization': can thinking globally and producing locally really save our planet?

I think this is especially important to think about cosmolocalism in the context of decolonization of science, health (human bodies) and even open science. And what draws me to continually work with the Open Insulin group is that the agency in the knowledge-production is not contingent on a colonial mindset, even at this stage in collaboration.

In practice, what this means is that the Mboa labs for example, could produce their own insulin, create media (as @ThomasMboa has done on Facebook around diabetes awareness and insulin), storytelling, foster partnerships and strategies, wholly rooted in the the local context. This is what I think success would look like for the OpenInsulin project, globally.

Last, there is the idea of launching a patient coop for OI, which we’d like to plan for the patients and producers controlling not only processes, but also the valuable health data that are produced from say, controlled trials. This kind of coop in theory, could allow individual actors to own the data that has traditionally been owned by corporations. We are also hoping this kind of coop would allow the technology to get into the hands of those who need it quickly, and not have to wait on the beauracratic processes in place that are oftentimes onerous and significantly slowing, and not always centered around the humans that should really have more say about how they want to create health in their own bodies and also their communities, local and beyond.

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Thank you @anique.yael it is a very interesting event. But regarding the thematic on neglected tropical diseases, Diabetes I and our work on insulin can be secondary and not fit with the event. The neglected tropical diseases is a very specific area in medicine, as you can see there: Control of Neglected Tropical Diseases. Related to this event, instead to talk about Open insulin in my country, it can be relevant to speak about Buruli Ulcer, Leprosy…African medical doctor can be impactful there @ramykim.

I think what is valuable about taking the OI story there, is that it can be applicable to NTD’s as well.

Since concrete actionable things are what they mentioned to be usually lacking, I’d go for showing on the ground tactics and then connecting those to a bold global vision. Eg. open labs all doing a part of the research (concrete), working together globally to open source insulin (global vision). And then picking apart that concrete thing into even more concrete things (community organisation, diy equipment, …) and the vision into more visionary things (decentral production, resilient supply chains, accessible pharma for all, …)

Seems to work for me when I try to convince.

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Super, thanks @ramykim @thomasmboa and @winnieponcelet !! Also think @amelia you may have some thoughts to contribute - in any case I’ll be considering your opencare ethnographic report in preparing the offer should it go ahead.

So I’m stretched with research network applications but have quickly whipped something simple up to propose. Will send it off now but feel free to feedback whenever and I can incorporate as things move forward.

Title: Open science techniques for resilient and autonomous ecosystems of care
Format: Workshop
Overview This workshop will reference the Edgeryders network’s approaches in using open science towards autonomous care solutions. Specifically, it will explore the decentralized and collaborative flows of open science as seen on Edgeryders; from concrete DIY resources for peer-to-peer production, supply and distribution through to knowledge sharing infrastructures and on to a shared vision across a global community. The format of a workshop has been chosen based on Edgeryders’ approach to collective intelligence and dialogue.

1. Which communities to you want to speak about - i.e scientists,HCP’s,rural in LMIC settings?
The offer will reference the Edgeryders network broadly, with two specific community use cases, one in an LMIC setting. Edgeryders is an online community of 4000+ hackers, activists, radical thinkers and doers, and just normal people that want to make a difference. Funded by the likes of the European Commission, the World Bank and the United Nations, it both serves the community and uses its collective intelligence to power its own activities.

2. IS this based upon work you are already doing? If so examples pls.
Yes. Overarching insights shared come from the OPENCARE project, an Horizon2020 funded research and innovation action which prototyped a community-driven model of addressing social and health care, and explored its implications at scale. Entitled Open Participatory Engagement in Collective Awareness for REdesign of Care Services, it drew on three elements: advances in collective intelligence research, advances in digital fabrication and cheap-and-open hardware technology; and the rise of a global hacker community.
Specific case studies for this workshops include two Edgeryders’ network projects in development.
a) OpenInsulin: a global cooperative working on the first freely available, open protocol for insulin production
b) Mboalab: a Research Center on Open Science (Citizen sciences, Open, DIY, Hacking, Making…) based in Yaoundé Cameroon aimed at providing a better life to local populations through research

3. What/Who would you ideally like to achieve by participating at the festival
a) to share insights around methodologies and platforms that serve Edgeryders’ network and
b) to engage ISNTD community in an ongoing dialogue to further contribute to knowledge sharing around open science ecosystems and autonomous care solutions

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Hi @anique.yael & @winnieponcelet and others. Thanks for the heads. This sounds awesome and I definitely think it should be pushed through. I am sorry I could not play much of a role or contribute to the development of this workshop at this stage. I so wish I could participate in this venture.

I’m personally more focused on engagement, participation and inclusion in Science, and testing new methods of engagement. I’ve just launched a project that is installed in 3 countries with interrelated themes that you may find interest, but its too early to provide any feedback just yet. Each country’s thematic focus follows: South Africa: Mental Illness as relevant to TB/HIV; Botswana: Mental Health and TB; India: Mental Health as relative to Climate Change and Food Security. Each team has autonomy in addressing and rolling out its engagement activities in direct partnership with Communities, Scientists/Institutions and Artists. Street Arts, Festival Vibes and Celebration of mutual learning, rather than packaged learning structured in a standardised pedagogy (i.e. teacher-learner relationships), are being explored. In the very same vein we’re trying to take the same approach to Sexual and Reproductive Health engagement in Tanzania, whereby community members are collaboratively steering the project from assessment to design to final evaluation. I’m unsure if these kinds of explorations are of interest to you all, at this early stage.

I’m also working on various projects, such as Photovoice and other participatory media for the African Health Research Institute, to understand post-trial socio-political dynamic and responsibilities toward ex-patients and their families. This relates to multi-stakeholder involvement including government (local, regional, national) , funder, implementing partners, scientific institution, etc. and exploration of the responsibilities of these stakeholders to ex-patients in rural Kwa Zulu Natal, South Africa. I’ll also try to understand how, or if at all, institutional practice transforms based on these interactions.

I’d be very interest in testing and playing around in other spaces as well, by working directly with others. I’m sorry for throwing in my 2 cents rather late, but perhaps for this endeavour I may not be very useful.

Do let us know if this has been submitted. I know some of the organizers/presenters, and shall be name dropping you all. Georgia Bladon (WT), Imran Khan (WT) , Ali Floyd (Uni of Dundee) and other Engagement Staff. Do let me know if I can be of any assistance. I planned to attend the Event but my current project commitments may not allow it.

I’d love to learn about the approach you’ll be exploring within the workshop as well.

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Thanks for taking the time to explain it, Nabeel! It sounds super interesting what you’re doing. How would be the best way for us to get updates in a non-intrusive way? A newsletter, Facebook page?
Ping @niekd

Hi @winnieponcelet. We have a project website that is in development: www.artingforhealth.com . It’s pretty much a skeleton at this stage. My company is called Interfer and our work can be viewed on Instagram, but I’ve been deliberate at not revealing too much on Social Media. We will be installing a website and social media for Interfer in the coming months which will feature our work, possible blog (including feedback and entries from communities, if desired of course).

I will also be posting on Edgeryders once our project has more traction, and I’d be calling on support, reflections and advice.

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This all sounds SO awesome @nabeel_p kudos to you. Really good to hear about them and clearly they’re relevant. Perhaps we can have a little video call with you, @ramykim and @thomasmboa to talk about your approaches such that I can feed them into the workshop, as yes it’s going ahead. What do you all think? We could do it perhaps 15 or 16 March if that suits?

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Hi @anique.yael. I’d be keen to participate. Additionally, I have mentioned all of you to Ali Floyd (Centre for the Arts Infecting Research / University of Dundee) who will be participating in the session before you, i.e. Tools & Reproduction Strategies: From Science to Masterpiece. He is keen to meet with you all at the Event. We’re working on a workshop for this symposium on Electronic Art: CFP ISEA2018 Durban, South Africa | ISEA International Website . Our focus will be innovative and relevant engagement practices; and Im considering some sort of collaboration with them in the near future.

I do wish I could contribute and participate directly. Anique, I think you should consider meeting Georgia Bladen as well. She is currently the Wellcome Trust Engagement Officer, and is playing a large role in the International Engagement Projects as well as Evaluations I believe. She will be leading the final session on M&E.

She may be a good connection should ER seek funding for projects involving Science/Engagement/Autonomous Care Solutions etc. This may be good for the Open Village but also for your collective and individual projects. Do let me know if you wish to pursue this and I could name drop you all in my interactions with her/them as well as perhaps introduce you to them a bit more formally via email in the near future.

Sounds good @anique.yael I’ll still be in California, so will be PST. @nabeel_p any chance you’re going to Africa Open Science Summit in April, that @thomasmboa is organizing?

Quick note between things to say Edgeryders are keynoting that @ramykim and Nadia and I will both be there! More on the rest soon. Come!!

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Will try to get there, pending personal funds!

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@winnieponcelet @thomasmboa @ramykim @nabeel_p I think it’s super important we have a call among us to think through the workshop and your cases. Please complete the doodle poll here so we can schedule a time (I’ve allowed for you on the West Coast Ramy).

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@anique.yael On it. Thanks for organising.

@ramykim I’d love to but have to gauge my funds at the mid-end March 2018 to see if this is a possibility. @thomasmboa Do you have any idea of the costs associated with participating? This would help me a bit.

@winnieponcelet @ramykim @nabeel_p @thomasmboa we’re on for the call to discuss ISTND workshop design Tuesday 13 March, 17h30 CET. Looking forward!

I might be able to join in for the last of it but probably not :-/ important meeting with our notary at 17:00. I’ll stay in the loop through the thread here.