Epistemic resilience of the medical community: a proposal that just came through

Workspaces Community Outreach & Coordination
, , , , ,
8

Some further notes after talking to @simonaferlini:

Minimum viable product

  • The “Coronavirus citizen defense kit” (???)
  • A knowledge base on dealing with SARS-CoV-2 on the ground, debunking the various myths (including those that have been encoded into rules and regulations).
  • Multilingual.
  • With a minimal social infrastructure (someone to ask for further info to; someone who can retrieve the original contributors, etc.)
  • Communities mostly involved: health care workers (“go running, it’s good for you”); psychologists (“let children play in parks”); lawyers (defending the rights of citizens from police abuse).

Value proposition

  • A map of bad practices. Many of those have been imposed not because they make any epidemiological sense, but only because they make police repression easier.
  • Giving people tools to push back against bad guidelines, bad regulations, bad laws. If a cop gives me a hard time because I am running, I can quote medical evidence saying that running is good for my health, and carries almost no risk of transmitting the disease. Maybe I still get fined, but I am better equipped for my court hearing.

Actionables:

  • @markomanka to ask for WHO endorsement on this.
  • As soon as we have that (or they say no) we coordinate on doing the application that @nadia mentioned. We put some money on community managers/interviewers, running the community infrastructure?

More info and reflections

The epidemics has an epistemic dimension. Phylosophically, the idea of “evidence-based medicine” (or -policy, or -whatever), forgets that evidence, in science, is not dogma. It is the opposite of dogma; it comes in to change, and enrich, our way of thinking. It renegotiates the analysis of the situation with respect to the rest of reality. In an interlocked system, reality has many ways to kill you: if you shut down the economy to fight the epidemics, people might die anyway, because infrastructures fall into disrepair. It does make sense to weigh the health benefits of lockdown against its economic costs. This is not necessarily the same thing as being inhuman, or greedy.

  1. Marco talks to firstline doctors, who are completely lost.
  2. Simona is more focused on the mistakes made at the level of health education (what are vaccines, how do they operate?) and community engagement (people only see repression, and repression is the only thing there is because there was no preparedness, no participation in creating contingency plans etc.). Guidelines exist (not obviously for this virus, but for similar hypothetical vira); community experiences also exist (Ebola), but they were not applied.
  3. There is a medical level and a societal level. At the medical level, doctors take orders from bosses. At the societal level, society takes advice from doctors. Or it should. Instead, a repressive system kicks in: staying in is bad for health, but it makes police control easier. Hospital doctors, in Italy, have underwritten this idea, that has no medical grounding whatsoever. However, society pushes back: we only see repression, we do not see active work waiting for solutions, and this reduces the legitimacy of the leadership.
  4. Infodemic: super high levels of noise make it really difficult to know what is true. The masks debate is exhibit A.
9

@hugi I see a connection with FHM and more specifically medical practitioners in Sweden, e.G Akademiska? :slight_smile:

10

One approach I am proposing is to do community building as network weaving, open mobilisation and structuring of info (including storytelling) as outlined here: What can we do to help your work and to help grow a network of mutual aid efforts? - #5 by noemi

Another stakeholder group (that could back the aforementioned lobbying efforts) are small businesses who are hit very hard by all this. Plus technologists that can build privacy enhancing alternatives to bad solutions currently invading our spaces. I’d put all this under democratic healthcare.

11

Nice idea. Let’s wee what @markomanka and @simonaferlini think.

12

Both of those will unfortunately be completely impossible to get in touch with for the foreseeable future, maybe in the fall, but I think they will have plenty of way bigger offers on the table. We can think about it though.

1 Like
13

I think I’ll let this topic evolve a bit more and might jump in later again. I won’t have enough time to do the desk research and manual writing, but I could contribute that for a single, compact topic of interest.

On the philosophical side, I have this to say about the current crisis response in Europe:

People are so stuck in old rules, laws and regulations. Still think that there was substance and merit to them, while we only had them in times of peace as a means of liability negotiation between people. Technology can do so much more for us if we’d stop the bickering and lawsuits about tiny details – and a crisis is exactly for that. To throw the old rules out and do what is technically possible.

Illustrative example: In Germany they were running out of ethanol to produce hand sanitizer. At the same time, there are gazillions of liters of bio-ethanol used to make E10 fuel (10% ethanol, 90% petrol). But officials declined to use that 100% ethanol because “it does not adhere to purity standards for substances used in medicine”.

14

but you don’t have to drink the stuff…

15

Ok so we would need an additional role/work

  • yes to storytellers
  • but we also need network weavers/partnership builders that go out into the world and partner the initiative with others doing good work e.g Data & Society
  • to this end we can probably recruit a couple of people who are working at the EC aggregating information e.g Karel Van Der Putte at DG Grow.

Here is a newsletter from Data and Society that are actually calling for partnerships around this issue:

APRIL 1, 2020

This week we’ve posted new work on [health misinformation ] and shaped broader conversations on how COVID-19 is affecting the intersection of technology and society, from human and AI, to the protection and valuation of human lives* amid accelerated supply chains.

For our community, we gathered better practices for ethical reporting on pandemics, and organized virtual power hours]) to support holistic digital community security while we’re all hyper-online. We’ve also taken pause to take care of each other, and ourselves.

Spot an opportunity for collaboration? Reach out to us at info[at]datasociety.net. The Data & Society team is here to help break down disciplinary silos, illuminate truths, and connect ideas.
AROUND THE INSTITUTE

  • Who Benefits from Health Misinformation?

“A public too fragmented to collectively trust health experts can’t hold an administration accountable for its lies. The grifters and snake oil salesmen are profiting now, but the uncertainty sowed today paves way for an oppressive power to take advantage of a fragmented society much more vulnerable to misinformation in the future.” — Data & Society Affiliate Erin McAweeney , Points

  • RSVP: NEW INC x Data & Society: Coping Through Precarious Work

On Wednesday, April 8 at 5 p.m. ET / 2 p.m. PT , we’re teaming up with NEW INC for a virtual discussion about how creative practices evolve during precarious times . NEW INC members will give lightning talks about their projects at NEW INC and attendees will be invited to join the artists in a discussion about work, precarity, and art-making. Featuring members: [Foreign Objects])
, [Heidi Boisvert], [Mark Ramos], and [Ziyang Wu]. [RSVP here]

  • After Supply Chain Capitalism

“The illusion of a contractor’s independence as plausible deniability and the right to be exploited by someone further up the chain needs to be undone. The insistence that dignity and life aren’t as essential as efficiency and market performance needs to be undermined with a social safety net that protects all people, including and especially workers most at risk, whether faced with a pandemic or simply faced with run-of-the-mill cruelties of capitalism.” — Data & Society Affiliate Ingrid Burrington , Points

  • Pandemic Narratives

“This is the moment for combining public health best practice with empirical research on misinformation, and to explore new ways to create public health messaging that is compelling, persuasive, and effective. It is also a moment of unprecedented mismanagement and misinformation being disseminated from the highest levels of government, and the problem requires a radically different approach to save lives and minimize harm.” — Data & Society Newsroom Outreach Lead Smitha Khorana , Points Bonus: Khorana also put together this guide for journalists on ethics and best practices for reporting on COVID-19.

  • Bored Techies Being Casually Racist: Race as Algorithm

“Race-as-algorithm in the present day is tied to the long history of creating migrant casual workers in colonial and later periods where casual labor was used to replace slave labor on colonial plantations in the British Empire, and as quick labor to reconstruct bombed-out German cities through the guest worker program. Focusing on the historical relationship between casual labor and racialization shows that firms that value race as a source of creative vitality remain complicit in racism against Indian tech workers within and beyond their walls.” — Data & Society Director of Research Sareeta Amrute , Science, Technology, & Human Values

  • As misinformation surges, coronavirus poses AI challenge

“‘It’s very hard to use automation when you’re in an information environment where the information is always incomplete and changing,’ Robyn Caplan , a researcher at the nonprofit Data & Society, told The Hill, about how shifting to automated content moderation may make the problem of misinformation worse.” — Chris Mills Rodrigo, The Hill

Ping @noemi re the points above on work, do you want us to get in touch with Data & Society? If yes maybe @thornet can connect us? I seem to recall one of the foundation’s fellows has been working with them at some point?

16

Open letter from a few hundred Belgian health care workers: “all the government does is surveillance”.

2 Likes
17

I was referred to this discussion by a colleague in the UK, and happy to see the discourse going on here. In the US we are confronting a collapse of our medical and public health infrastructure that would have been unimaginable 5-10 years ago. Our Centers for Disease Control & Prevention have gone so far as to recommend bandanas as being “better than nothing” for protection. The public is left on its own to sift through conflicting pontificating by federal and state level officials or worse yet media outlets that are fanning the flames. A trusted, vetted source of reliable information both for the medical community and the public is greatly needed.

3 Likes
18

Would you agree with a few reports I have read asserting that the current administration has politicized the CDC in the way it controls its messaging and guidelines?

19

Most definitely. This politicization has taken mostly the form of taking the CDC out of its usual role of managing a situation like this. However, it has also involved controlling the messaging as you mention. Of course, this was also the case during the Bush II administration.

20

I read this morning that the Dept of the Interior in 2017 reversed a “bottom up” alarm-sounding policy that allowed National Parks to make local decisions about staying open in a crisis. Now they have to get permission from on high. Several parks asked for permission to close a few weeks ago and were denied. I saw a recent picture taken at Zion NP where a popular trail was loaded with people all rather close to each other as if nothing was wrong. While the President is was saying there was nothing to worry about, they didn’t want to make the parks look like they didn’t agree. This is using public health as a political weapon.

21

Yes. Sad.

22

Hello and welcome @FamDocDon! I guess @markomanka is facepalming right now about the bandanas.

Update: we set up a listening post to discuss some of these topics, specifically the bit about “fight the pandemic by repression and curtailing of civil liberties”, which happens exactly under the “better than nothing” banner. More information at the link below.

23

Another example of this would be UK breweries who have started making alcohol sanitizer, but still have to pay duty of about £20 on each litre of alcohol they brew…

2 Likes
24

Possibly statisticians - to help sift thru the noise of badly done statistics (usually retrospective studies), underreported deaths for a variety of confounding reasons, etc. It’d be an idea if we had an index of all the bad science that is circulating, and we could authoritatively say, ‘this is rubbish for all these reasons’ (for example, chloroquine is now being touted as the miracle cure, when there’s no evidence it works at all actually). We could be a beacon to show what is and is not true of the dozens of potential nonsense claims that keep appearing…

1 Like
25

Excellent point about statisticians, @salvo_cognetti. @MariaEuler has already written about the difficulty she and others have when dealing with the reporting of statistical results – she calls it statistically feeling bad.

So, we are going to be starting to look into the issue of how the pandemic shifts society towards tighter surveillance via policies that are presented as based on medical evidence next week, at this event. You are very welcome, especially if you bring any statistical expertise with you.

26

have a look at this crowd - maybe worthwhile reaching out and inviting them? Fighting Coronavirus: A New Infection Alarm System on Your Smartphone - DER SPIEGEL

27

Thank you! Unfortunately I am no statistician. I suppose I should introduce myself. I am a medical doctor who has recently moved from UK to Italy and I am now working in northern italy.

I initially got to know about edgeryders in 2015, when I was doing my elective at CERN and I met Nadya and Massimo, and I have known Marco for quite some time.

I was a psychiatry trainee in the UK but am now working in a ‘punto di primo intervento’ - basically a scaled down a&e in a rural setting. I have had a longatanding interest in TB and infection control for it and at one point coauthored a toolkit for interprofessional collaboration for TB infection control. Many of the principles of TB IC are actually transferrable to Covid, and if you want I can get into details about things I routinely see done wrong.

Other than that, I am an avid nethack and d&d player… And when i am not doing that i read, play the flute, and play chess.

I see that Edgeryders has grown a lot from 2015 and I am impressed :slight_smile: i think we can really make a difference thanks to our… I don’t know if it’s an actual term, but I would say, ‘open source mindset’? I hope you get what I mean.

Nice to meet you all and thanks again for taking on this project! I feel we will do a lot of good.

Salvo

5 Likes