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

I am just off a very interesting call with @markomanka. He and @simonaferlini are thinking of a new bottom-up initiative. Through me, they are asking Edgeryders for help. Marco – a doctor – and Simona – a public health manager – both in Italy, are on the frontlines, so I am going to do the writing here.

It turns out that the health care system, in many countries (but not in all), got overoptimized over the years. It was honed to be efficient in the context of a predictable environment, with a known mix of pathologies. Over time, it discarded redundancies and second lines. It is now badly equipped to deal with unknown unknowns and black swan events.

Overoptimization also happened in agent space. Not only hospital wards not running at full capacity were closed: the people who got promoted to leadership positions in public health tended to be narrow specialists, who build their career on, say, hepatitis B. Their epistemic horizon is also made for stable environments. They do not know how to move in an epistemic space where evidence is absent, or ambiguous; they are not used to questioning evidence, and dislike doing so.

The result was a situation where evidence from China was not sifted and interrogated, but mistrusted. As a result, many countries in Europe underestimated SARS-CoV-2 (“mortality is like a flu’s”, which is of course true if you have the resources to treat every affected person to high standards). At this point, in Marco’s reconstruction, the whole system went into emergency mode. The emergency, plus the epistemic rigidity, mean that the protocols that are being communicated to doctors on the frontline are shaky at best, and “magical thinking” at worst. Ward directors and even government guidelines (Italy) will tell doctors to “keep working on patients even if you test positive, as long as you asymptomatic” (!!!), or to wear makeshift masks if you do not have any proper ones “because they are better than nothing”. Intensive care wards are being erected in a few days, by reconverting space from, say, psychiatric ones. Additionally – and this is very, very serious – there are strong suspicion that actual data are being hidden or misrepresented. Hidden: I have some personal evidence, as the open data community in Italy (@napo, @piersoft) is desperately asking regional authorities to release the data with open licenses and proper documentation. Misrepresented: it turns out that, in places like Bergamo, only 10-25% of the extra mortality with respect to seasonally adjusted average is explained by the official deaths by COVID-19. It’s hard to really figure out what is going on, also because shifting criteria of access to testing (Italian) mean that there is no way to even observe the statistical trends.

Epistemic resilience means, instead, being critical of evidence, and disobeying if that saves lives or unnecessary suffering. In the case of masks, we do have evidence: a makeshift mask is to a mask what a blanket it to a parachute. It is not “better than nothing”, it is exactly the same as nothing. A makeshift hospital ward might have intensive care machines, but it risks infecting patients in nearby wards unless air circulation is addressed seriously, with proper ventilation and filters, which is a feature distinguishing makeshift wards from proper ones. Plus, these things might create a false sense of security – again, we have a literature on this, more from finance and from war medicine – and distract us from taking measures that, while far from optimal, are indeed “better than nothing”. Example: isolate people at home, and send them cheap DIY ventilators or some such.

Marco and Simona think that epistemic resilience for the medical community means three things.

  1. Build a trusted knowledge base on practices to deploy in the face of the evidence we have, and that we do not. Right now, doctors are getting advice off YouTube channels, and randos on WhatsApp. Some solid stuff is there, but also people who say the government has created SARS-CoV-2 to kill all the NoVax. I think of this knowledge base as the kind of document that @matthias and @lucasg are good at maintaining. This is necessary, because in the face of bad instructions doctors and nurses need some evidence-based good knowledge to push back. This need is why they are all on WhatsApp. Marco thinks this would consist both of articles and of stories from the frontlines. Important: this needs to be multilingual, because “the doctor on the field in Heidelberg is going to look for evidence in German”.
  2. A lobbying effort, informed by this knowledge, to try to get the health care system to get unstuck.
  3. A way for these doctors, nurses, etc. to stage a symbolic protest. “We cannot strike during an emergency, but maybe we could carry a symbol, or something.”

So, they asked me if Edgeryders could help, mostly with 1. A community is assembling around them; translation efforts could be asked to Translators Without Frontiers or something. But we could host the community, and put in some editorial/community management work, maybe? Collect stories? Anybody has any thoughts, especially @matthias, @nadia, @noemi, @hugi and @johncoate?

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Yes. Definitely.

Building trusted Knowledge base

Community Journalism

  • Story building: Yes we can put a community journalism coordinator, plus one dedicated journalist coordinator/editor on doing interviews and editing them into stories. I am about to put up a recruitment ad for such a role within NGI + in house copywriter - they could allocate x% of their time on this

  • We could use the now.edgeryders.eu application to create an always open room where medical people with edgeryders accounts can drop in and talk to one another over video chat - once you have an account you dont need to do the whole zoom setup go here bla bla bla.

  • Question: Where would the stories come from - would Marco and or Simona point us to people?

Messaging App stream aggregation & upvoting

  • Content aggregation and upvoting: Something that could be very helpful is to have a place where people can forward content they like from different messaging apps, and then up or downvote it. The way you can share content from one whatsapp conversation into another
    • Possible way we could help: Develop the telegram to discourse app @owen has been working. The way it works is that people can send a message to a bot we have on telegram. Whatever is sent to that bot pops up in a common stream. Perhaps this software can be developed so that 1) you can update it the same way via whatsapp bot 2) in this stream there is the possibility to upvote and downvote submissions. What’s the link to the rough demo @owen ?

Protest/lobbying support

Two immediate things come to mind that we could help with

Easy to do

Downloadable pattern people who support the protest can print and put on their tables (make them visible for video chats) https://kioskofpiracy.org/print/

KopimiCutout

More complex but also doable: Digital Signature for emails

I think this is an excellent idea. At which stage is this effort on the side of @markomanka and @simonaferlini?

I am living in the middle of a very interesting data point, seeing that Sweden has the same evidence as anyone else but has decided to swim against the current.

Hopefully something useful can come from this. Looks like the need is there.

they are having a call with Alberto tomorrow so we will know more after

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@marina @alberto
I found a fast track funding call that could be a good fit for the work above.
Up to 45K Eur for Covid related projects, evaluation and response on a weekly basis
Super simple appilcation process, you fill in a template that you find here and upload it in the same place:
EOSC site: https://www.eoscsecretariat.eu/funding-opportunities/COVID-19-Fast-Track-Funding

Summary:

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@markomanka, @simonaferlini, what do you think?

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.

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

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?

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.

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

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.

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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”.

but you don’t have to drink the stuff…

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?

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

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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.

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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?

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.

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.