Ethan Zuckerman’s online home, since 2003

Pronoia, beautiful inefficiency, and an artwork built for one

In the fall and winter of 2013, the writer Rick Moody experienced a set of events designed to change his life. His priest gave him a book, apparently written decades ago (though actually specially crafted just for him), to read with his daughter. It told the story of a secret room, and soon afterwards, Moody was led by friends to his own secret room, a disused hardware store in Brooklyn, where he encountered objects that evoked moments in his life and in the book. Music he encountered in the secret room reoccurred, when the artists orchestrating these events picked Moody up in New York City, flew him to Regina and drove him to an isolated prairie, where he sat in a pavilion made of hay bales and a cellist performed the composition he had previously heard. As the piece escalated, hundreds of performers followed Moody moved through New York, dancing on subway platforms and surrounding him as costumed fools in Brooklyn’s Metrotech Commons. A photo of Moody surrounded by his hundred fools suggests a moment of transcendent bliss.

Moody was the “participant” in a performance titled “When I Left the House It Was Still Dark”, created by Odyssey Works, which “makes large scale, durational, interdisciplinary performances customized for one-person audiences.” The company has been making work since 2002, but as less than two dozen people have served as the audiences for these works, it’s not surprising you may not have heard of them. Writing about the company’s work in 2012, Chris Colin wrote about the “beautiful inefficiency” of this method of working, the absurd and beautiful idea of an immense effort deployed to create an emotional response in a single person.

Odyssey Works is not alone in crafting experiences designed for a single person. Colin offers some reference points for contextualizing works like “When I Left the House It Was Still Dark”: the immersive theatre experiences of Punchdrunk, the producers of “Sleep No More“; works like “You Me Bum Bum Train” that puts a single audience member at the center of a set of scenes in the work. A set of films called “Experiment Ensam” (Experiment Alone) takes experiences normally experienced in a large group – a comedy club, a karaoke bar – and recreates them for a single person. Recently, Experiment Ensam produced a Bob Dylan concert for a single fan, a brief set with Dylan and his touring band at the Philadelphia Academy of Music. The performance was filmed with eight cameras and will be released on YouTube later this month, raising questions about whether the audience was Swedish TV personality Fredrik Wikingsson, who attended the concert, or those of us who will watch it online.

These acts of personalized theatre don’t always go well. Jorge Just produced a memorable story for This American Life about Improv Everywhere, a New York City-based troupe that creates theatrical moments in everyday life. (One of their recurrent projects is the “No Pants Subway Ride”, where subways slowly fill up with passengers who are unremarkable but for the fact that they’ve forgotten their pants.) In the “mission” TAL examines, Improv Everywhere tried to give an unknown indie rock band their best gig ever, recruiting an audience to learn their songs, sing along with the performance and shout out requests for the band’s songs. After the initial elation of playing for a large crowd wore off, the members of the band felt like they had been the butt of an elaborate joke, laughed at by the Improv performers and made fun of online. The tension between Improv Everywhere’s good intentions and the damage it caused the band makes Just’s story striking and poignant. Theatre for one is hard to do well.

Odyssey Works may surprise their participants, but it certainly isn’t ambushing them. Participants are selected through a detailed application process, which begins with an online application that asks about a person’s favorite places in her city of residence and her experiences with pieces of art. The company interviews family and friends, both to recruit them into building the experience for the participant, but also to understand what she is likely to be moved or effected by. In preparing “When I Left the House It Was Still Dark”, the producers read all of Moody’s books, interviewed thirty of his family and friends, and visited him several times before designing the work.

Abraham Burickson, co-founder of Odyssey Works, explains the logic behind this process: it’s about discovering the ideal audience for a piece of art. Artists hope their work moves the audience, but it’s a frustratingly inexact process. Armed with a deep understanding of the participant, the company deploys imagery and ideas designed to evoke a more powerful response than they would in an audience as a whole. “Art that affects you — in any medium — is very specific to you. It’s as if you have a set of subjective protein receptors in your creative-appreciation mind, and the piece is so perfectly engineered to your subjectivity that it can break you open for meaning to flood in. We wanted to see if we could achieve that by crafting an experience that would affect someone even more deeply than a randomly arrived-at occurrence might.”

This working method could be deeply creepy if it weren’t so carefully and lovingly done. Part of experiencing one of these artworks is realizing you’ve been under surveillance for months in advance and that hundreds of people have learned intimate details of your life in order to present this experience to you. In a sense, this is what web advertisers and other purveyors of personalization promise. In this case, it’s done poetically and beautifully. In that sense, it reminds me of Yuletide, in which thousands of authors write custom fan fiction stories carefully tailored for the recipient as an especially personal version of “secret Santa”. Because the Odyssey Works pieces are so immersive, Burickson explains that they tend to create a sense of “pronoia”, an irrational belief that the world is conspiring to do wonderful things on your behalf.

For reasons I cannot explain, the images crafted for Moody – particularly that of a cellist performing a composition in a prairie outside Regina, Saskatchewan – are some of the most moving I’ve recently encountered. They make me wonder about the mechanics of this method – am I responding to imagery that Moody and I happen to share? (I resonate with the prairie, but not the idea of the Cloister, the secret room Moody explores, which seems designed to connect with Moody’s Catholic background and doesn’t trigger a similar receptor in me, a fundamentalist Unitarian.) Or are Burickson and colleagues creating powerful images, inspired by Moody, but elegantly crafted to connect with a wide range of receptive audiences? By identifying an image that resonates profoundly for Moody, are they inadvertently creating deeply potent ideas that would resonate for anyone who encountered them?

Since reading about Odyssey Works, I’ve become somewhat obsessed with the idea. I don’t actually want to be a participant in one of these pieces – it’s overwhelming to think about accepting a gift of that magnitude. Instead, I want to understand what Odyssey Works created and what Moody experienced, to the point where I’m thinking about approaching magazine editors to pitch the story so I’d have the chance to interview Moody, Burickson and his collaborators.

It’s as if Burickson and his colleagues have created a work just for me, not a performance, but an impossibly fertile idea of making art that expands beyond the edges of the page and into every aspect of a viewer’s life. For all I know, the few articles I’ve read are part of an elaborate fiction designed to evoke a particular set of reactions in me as part of a carefully crafted artwork I did not consent to, but am enjoying nevertheless.

In 1994, when I was still pretending to be an artist, my art school roommates and I began designing an elaborate, multi-website fantasy, something that would later be described as an alternate reality game. (One of my roommates was filmmaker Jackie Goss, and we were extending a film she’d made about young women growing antlers.) We never progressed beyond sketches, in part because we never could figure out who we wanted to discover these sites and what we hoped they’d make of them. Twenty years later, there’s something lovely about discovering the same idea, done so well and towards such a beautiful goal.


Why cameras alone won’t protect black mens’ lives

I wasn’t expecting the grand jury to indict Darren Wilson, the police officer who shot and killed Michael Brown in Ferguson, MO. I was disappointed and outraged, but not surprised. Unfortunately, the response of local and state government in Ferguson to the shooting and subsequent protest raised serious doubts about the fairness of those institutions. Furthermore, there’s a dispute at the center of the Michael Brown case as to what happened when Wilson confronted Brown. While I agree with Ezra Klein’s conclusion that Wilson’s story is “literally unbelievable” and find his reading of the testimony of Dorian Johnson, Michael Brown’s friend and witness to his death, more compelling, I find it possible to understand how a grand jury could take Wilson’s word over Johnson’s.

But I was surprised that Daniel Pantaleo was not indicted for the death of Eric Garner. I shouldn’t have been. Police officers are very rarely indicted for on-duty shootings (WSJ reference), and only two New York City police officers have been indicted for killing in the line of duty since the 1960s. In addition, Staten Island is whiter, more conservative and more sympathetic to the police than the rest of New York City, suggesting that an indictment was less likely there than in other parts of the city.

Still, there was the video.

There’s not much uncertainty about what happened in the moments before Eric Garner was killed. We’ve seen the argument between Garner and Pantaleo, the group of armed police officers wrestling Garner to the ground, the choke hold Pantaleo performs on Garner, the desperate pleas of “I can’t breathe.” More damning in some ways is the video shot after Garner has been brought to the ground, depicting a group of officers apparently more focused on limiting access to the crime scene than in attempting to save Garner’s life with CPR or another intervention. As Garner’s mother, Gwen Carr, told reporters: “I couldn’t see how a grand jury could vote and say there was no probable cause… What were they looking at? Were they looking at the same video the rest of the world was looking at?”

In 1991, when Rodney King was beaten by Los Angeles police officers after a high-speed chase, a bystander’s video brought the violation of his civil rights to national attention, leading to indictment, prosecution and to rioting when King’s abusers were acquitted. The King video was shaky and blurry, but it was damning, at least in the court of public opinion.

Two decades later, most Americans carry cameras with them all the time, and surveillance cameras are a pervasive feature of the built environment. Video of King’s encounter with the police was unusual at the time. Now, situations like Michael Brown’s killing in Ferguson, where there is no witness, surveillance or police dash camera video, are becoming the unusual cases.

One of President Obama’s responses to the Ferguson protests has been an announcement that he will seek $75 million in Congressional funding to make 50,000 body cameras available to police forces. Given the massive federal funding that has allowed US police forces to acquire military equipment to wage the putative war on terror, this seems like a step that’s both reasonable and overdue. But given the apparent disconnect between the footage of Garner’s killing and the grand jury’s decision, it’s clear the relationship between cameras and justice is more complicated than it appears at first glance.

Requiring police to wear body cameras likely has a prophylactic effect. Officers know their actions are being watched and know that disciplinary action (short of having criminal charges filed against them) is more likely to result from abuse than when their actions were unmonitored. complaints against police officers in Rialto, CA fell 88% a year after body cameras were put into use in 2012. Other departments have seen significant decreases in complaints by mandating the use of dashboard cameras in police vehicles. Apparently, the panopticon shapes the behavior of the officers being watched in much the way Foucault predicted: the combination of the perpetual possibility of surveillance and a disciplinary culture shapes behavior. What’s not clear is whether the panopticon still works when surveilled behavior is revealed to be consequence free. (It’s likely that there will be consequences for Pantaleo, as he has been stripped of his badge and faces an internal investigation. Wilson has left the Ferguson police force. Those professional consequences are small consolation to the families of the dead men.)

If pervasive cameras help prevent bad behavior but don’t eliminate it, they have another consequence as well: they make police abuse visible to the general public. Yesterday, I heard a closed-door briefing from Sherrilyn Ifill, director of the NAACP’s legal defense and education fund. She began by explaining that we are not experiencing an unusual wave of police abuse. Instead, pervasive cameras and the ability to share stories and mobilize via social media mean that we’re seeing far more of these stories. The last two weeks have added two new names to the vast list of unarmed black men killed by law enforcement: Tamir Rice, a 12 year old boy shot by a Cleveland police officer while playing in a park, and Rumain Brisbon, a 34-year old father of four, shot by a Phoenix police officer.

Ifill argues that these incidents have been distressingly common for many years, a contention supported by Pro Publica’s research suggesting that black Americans are more than 20 times more likely to be shot by police than white Americans. (Figures from the FBI suggest, though, that we may be experiencing a higher level of police shooting than in years past.) What’s unusual is that these incidents, which generally receive only local news coverage, are being seen by activists – and increasingly, by the general public – as part of a pattern of racism, implicit bias and over-reliance on violence on the part of law enforcement. The shooting of Tamir Rice would have been a tragedy for the young man’s family and community (and yes, for the officer, who will live with the guilt of killing an innocent young man for the rest of his life); now it is also a rallying point for a national movement demanding justice and change.

It’s possible that Timothy Loehmann, who shot Rice, will be indicted, though unlikely. Revelations that Loehmann had been determined to be unfit for duty by another Ohio police department combined with the Justice deparment’s censure of the Cleveland police department might put sufficient pressure on prosecutors to bring Loehmann to trial. But let’s consider what will happen if Loehmann is not indicted. Surveillance video shows that Loehmann shot Rice two seconds after his police cruiser arrived at the park pavilion where Rice was sitting. Much as the video of Garner being choked into submission and death makes Pantaleo’s narrative hard to accept, it is impossible to reconcile the footage of Rice’s shooting with Loehmann’s assertions that Rice was warned before he was shot.

Widespread availability of video footage combined with a legal culture unwilling to indict police officers has a likely outcome: further erosion of trust in law enforcement, the judicial system and other public institutions. Faced with imagery that depicts criminal negligence and a legal system that fails to prosecute these actions, the net effect of this imagery is the (further) loss of face in government institutions. Add to this another factor, documented by Micah Sifry in his new book, “The Big Disconnect”. Social media has demonstrated a great ability to organize challenges to power, as in the Arab Spring, but has been frustratingly ineffective in helping build new systems or reform existing ones. It’s easy to imagine a situation in which imagery erodes trust, mobilizes dissent and does little to channel that dissent into paths towards change.

I desperately wish that body cameras were a single, simple solution to police violence against black men. It’s hugely encouraging that use of force was reduced by 60% in Rialto, CA after cameras were introduced, but that reduction is a tribute not just to the technology but to a departmental commitment to culture change. Eliminating disproportionate violence against black men requires training officers so they don’t fire weapons within seconds of an encounter, addressing the implicit bias that allows an officer like Loehmann to overestimate the age and danger of Tamir Rice, and changing a culture of policing that leads too many officers to view their workplace as a war zone, not a community they live in. It requires reforming a prosecutorial culture that is too comfortable with law enforcement, and finding new ways for oversight over America’s tens of thousands of independent police departments. It requires gun control, so that police officers are not – justifiably – concerned that any encounter with a suspect could end in gunfire.

Sharing images of the unforgivable violence against Eric Garner, Tamir Rice and others is a necessary but not sufficient step towards change. At best, the knowledge that the world is watching may help slow the hand of a police officer’s hand and keep a confrontation from turning violent. But the contradiction between these unforgettable images and these unjust institutional responses is infuriating, alienating and socially damaging.


Three selfies, and two appreciations of fellow travellers

I took the fall semester off from teaching, which is a good thing, as I’ve been traveling far more than is healthy, mostly to give talks. I was in Sao Paulo last week talking about Brazil role as a center for democratic innovation, and hope to post either notes or a video of that talk soon. But here are two others that are already online and that I’m proud of:


“Journalism after Snowden: Normalizing Surveillance”

The estimable Emily Bell of Columbia’s Tow Center is editing a volume of essays about how the documents revealed by Edward Snowden have changed journalism as we know it. Most of the participants in the project are, like Emily, long-time newsroom veterans with smart things to say about journalism’s future. Since the last newsroom I worked in was that of the Lewisboro Ledger in 1989, I thought it would be wise if I played towards my strengths and talked about advertising, surveillance and the idea that a public sphere that monitors our every movement is corrosive to the notion of citizenship.

I leaned heavily on a paper by Kevin Haggerty and Richard Erickson, “The Surveillant Assemblage”, which in turn leans on Gilles Deleuze and Félix Guattari to offer a view of surveillance that’s pervasive to the point of inescapability – thanks to Kate Crawford for pointing me to this paper. The question I ended up asking in the talk was whether organizations like newspapers (and, pointedly, The Guardian, where Emily is a board member) had a responsibility to try to create surveillance-free civic spaces. Fun questions – I don’t have the answers, but I was happy to have the chance to explore these ideas.


“Digital Cosmopolitans”, my Google Books talk

This other talk covers material that’s familiar to folks that regularly read this blog. It was my contribution to the Talks at Google series, speaking about “Digital Cosmopolitans”, née “Rewire”, now out in paperback. I have had the hilarious misfortune to be touring the book at the same time that Amanda Palmer is touring her excellent The Art of Asking – I gave a reading at Porter Square books the evening after her book launched and spoke to an extremely small, though enthusiastic crowd. Now I discover I’m following her at Google as well. No worries – she’s awesome, and next time I will ask her if I can simply refer to her as my opening act.

Anyway, Google are great hosts, and this is one of the better version of the Rewire/Digital Cosmopolitans book talk, so if you haven’t heard me try to summarize the book in half an hour, here’s your chance.

I’ve been doing some cool radio interviews lately as well. Benjamen Walker’s awesome “Theory of Everything” Podcast is doing a series called “The Dislike Club”, which basically features people who think about the internet realizing that we’re really pissed off about the current state of things online. In the second episode, I get to talk about my confession and penance regarding my role in bringing the pop-up ad to life – it’s a good conversation.

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Keep your eyes open for Gimlet Media’s new Reply All podcast – it’s a relaunched version of the excellent TL:DR, which spun out of On the Media. I’m likely on an upcoming episode, offering my same lame apologies for making the internet a worse place.


Even declaring this as a selfie, I’m not super comfortable with a post that just lists talks I’ve given lately. So two other talks to point to:

Willow Brugh has been working on question of “weaponized social”, the ways that online spaces for deliberation and debate are too often turning into spaces of personal threat. She’s working on face to face meetups to explore the idea and its consequences, and is bringing it into unexpected contexts, like a gathering of female programmers and computer enthusiasts in Kenya, hosted by the remarkable Akirachix. Check out her presentation, and a broader conversation about tech and gender in Kenya, above.

Micah Sifry has a terrific new book out, which I hope to be reviewing next week. In the meantime, my students blogged his talk today at Berkman (which I missed because I’m in Budapest.) Micah is deeply passionate about the ways the internet could be used for social and political change, and honest about the ways in which internet enthusiasts have thus far fallen short. His book, The Big Disconnect, is well worth your time. More about it next week.


Pixação, or why São Paulo looks like a death metal album cover

One of the first things I noticed about Sao Paulo was the graffiti. It’s everywhere, and it’s stylistically very striking – angular, highly stylized letters on walls, buildings, overpasses. It’s clear that it’s writing, not just glyphs, yet it’s difficult to parse the characters. When I try to decipher it, I feel as lost as I do trying to understand spoken Portuguese: it’s clear someone is communicating with me, and while I’m on the verge of understanding, I clearly don’t understand.

It took less than 15 seconds with Google to learn that this style of writing is called “pixação“, that it takes its name from the Portuguese verb “to paint with tar” and that it’s distinctive to southern Brazil, especially São Paulo. A few more links and I discovered that my curiosity about pixação is about five years too late if I wanted a new job as a “coolhunter”, as the phenomenon has been thoroughly explored – and leveraged – by designers and marketers around the world.

The video above, by Joao Wainer for coolhunting.com, did the best job of answering my questions about the writing style: what are people saying, and why are they choosing to say it this way. Pixação has its roots in the 1980s, a moment when Brazil overthrew a military dictatorship and emerged into an inspiringly participatory democracy and a depressingly unequal society. The original artists wrote political slogans, while current practitioners are tagging – they’re writing the names of the crews they write with as well as personal tags, which are often a non-alphabetic symbol.

What most sources make clear is that pixação doesn’t really take place at street level – it’s all about heights. The most ambitious crews scale the outside of multistory buildings so they can tag the highest floors, and there’s evidently fierce competition between crews to place tags in as visible and inaccessible places as possible.

Pixadores from James Post on Vimeo.

A documentary from Amir Escandari for Helsinki-Filmi focuses on the dangers of being a pixador, the coordination of the crews, and the politics of the art form. Simon Romero, writing for the New York Times, follows the political thread, interviewing writers who see their work as a form of class warfare, a way that marginalized classes can inscribe themselves on an economically divided city.

Other documentaries celebrate the politics as part of a romanticization of the practice and the lifestyle. “Os Pixadores” by Ben Newman looks like a sneaker ad, which is appropriate as it’s sponsored by Puma’s streetstyle brand. A band of attractive, multiracial kids do shockingly dangerous things while talking about the need to be heard. It’s not hard to imagine this message selling shoes in any economy.

Others have clearly fallen in love with pixação as typography. Gustavo Lassala has created a font – Adrenalina – that is based on his masters thesis studying pixação. He extrapolates from 800 photos taken in São Paulo to create a typeface that’s visibly related to pixação, but immediately readable, an impressive achievement. (His name for the font suggests that he, too, understands that graffiti can sell sneakers. Or perhaps a really badass guarana-based energy drink.) François Chastanet, a professor of graphic design, has written a lengthy tome on pixação, whose endpages feature dozens of different versions of each letter.

Pixação on the wall of a squat in Sé, São Paulo

What I love about pixação is that it reminds me of death metal album covers, which inevitably feature the band’s name written in a jagged, angular script that’s incomprehensible on first glance. This, it turns out, is no accident. Metal, particularly the “New Wave of British Heavy Metal”, was the music of choice for early pixação writers. (Of course, anyone who’s ever banged their head rhythmically knows that Iron Maiden continues to exist primarily so they can tour Brazil annually.) Commentators trace the letterforms of pixação to album covers by Maiden, Slayer and others. I can’t really see it, myself – Maiden used a blocky letterstyle I associate with early 1980s videogames, and while Slayer and Motörhead both are somewhat angular, Napalm Death and especially Morbid Angel look like the most obvious precursor to the lettering style, though both bands postdate the emergence of pixação… which means there’s a band that had traction in Brazil and helped popularize the death metal style of writing, which I could probably find if I were only willing to crawl down another internet rabbit hole.

For the meantime, I am consoled that this dark and beautiful form of writing has a name and that I know it, even if I can’t really pronounce it. And that I’ve learned another tiny detail about this fascinating and overwhelming country.


Partners In Health at the MIT Media Lab – design challenges around Ebola

Today’s Media Lab Conversations involves Ophelia Dahl and Dr. Megan Murray from Partners in Health with Joi Ito and David Sengeh from the Media Lab. The topic is understanding Ebola, and we’re learning about the disease to see if there’s anything the Media Lab can do to help organizations like Partners in Health combat the spread of the disease.

Ophelia Dahl, the executive director, of Partners in Health begins by noting that when she began her work in Haiti decades ago, audiences were less welcoming and receptive to these issues. With Paul Farmer, the organization was designed to respond to situations like the one in Haiti, where there was a complete dearth of health services available.

Partners in Health is not a disaster relief organization. While it addresses the everyday disaster of poverty, which has massive health impacts, and while they are often critical first responders to natural disasters, they are structured very differently. Because they work in countries like Haiti over long periods of time, they had doctors, platforms and a supply chain already in place. “We focus on systems,” she explained, which made them particularly well suited to help with Ebola. The organization has a home in Boston and partners closely with local academic institutions to train and prepare medical researchers and professionals to understand these complex health situations.

Dahl reminds us that Ebola is named after a river in the Democratic Republic of Congo, and that we’ve seen several outbreaks over the years. None of those outbreaks killed more than a few hundred people. This outbreak, starting in Guinea and spreading into Liberia, Sierra Leone has killed at least 8,000 people, and likely many more. A hallmark of this disease is that it spreads from patients to caregivers, and as people in rural areas have moved to urban areas to seek care, it’s moved into large cities.

There’s a tendency to think of Ebola as a death sentence. The high fatality rate – almost 70% – has an underlying cause: the weak, and now collapsed, healthcare system in these countries. Our collective failure to treat patients explains the death rate. Patients who contracted Ebola in the US have all survived – this is a disease that can be survived with proper medical care. That proper treatment is not complicated. It’s about staying hydrated and managing electrolytes. Most critical is good nursing care.

Dahl recently returned from West Africa where she talked to several survivors of Ebola. The survivors were young, had been in good health before the disease, and probably survived due to luck and their strength, not because they received especially good care. Many of these survivors had been caretakers to their families, and watched family members die before they contracted the disease. Hiring these survivors is key to Partners in Health’s strategy. Not only will they have immunities and a deep understanding of the virus, but creating strong healthcare jobs for these survivors is a way to combat the stigma of the disease.

The system that is weak and has collapsed means that more people are dying from the systemic effects of Ebola on the healthcare system, not from the disease directly. There’s not a single place open for women to deliver their children when a country is facing a crisis like this. Countries face a massive set of problems in the wake of Ebola since there’s not a functioning maternal health system, an emergency medical system or really any community care at this point. The resilience of health systems in the face of emergency, like the marathon bombings in Boston, is radically different than the situation on the ground in West Africa.

Dahl shows us a treatment center in tents, and a teaching hospital – Hopital Universitaire de Mirebalais – a hospital Partners in Health helped build in only three years. Linking these treatment centers to these teaching hospitals is a key step we need to take.

She shows us the gear healthcare workers are wearing – it looks like foul-weather gear worn on a ship, and features three pairs of gloves. Imagine finding a vein in a dehydrated patient with those gloves on, sweating – finding better personal protective gear is one of the first steps that needs to be taken.

Dr. Megan Murray, of Harvard Medical School, Harvard School of Public Health, and Partners in Health, explains that the disease is so new to the medical community that people are still working out the proper treatment protocols. In these countries, what’s emerging is a three-tiered system of care. Countries are building tent-based Ebola treatment units, often in major cities, where labs can test samples and perform diagnosis. These centers are expensive to set up, and they’re often far from the communities where patients live.

The second tier of support is community care centers, places where patients are isolated from their communities so they don’t inflect their caregivers. Unfortunately, these have been really bad places, places where people go to and die – they have operational and image problem if they want to serve the populations they seek to help. At an even more grassroots level, community health leaders are working on screening and contact tracking, helping identify the people who are likely to have the disease for treatment at ETUs and CCCs. In terms of innovation, Partners in Health is looking for innovation in diagnostics and treatment at the ETU and CCC level, and in epidemeology and vaccines at the community level.

The fatality rate on Ebola, between 50-70%, is more fatal than anything else we’ve seen in the public health sector. The challenge is improving those rates in the ETUs and CCCs while maintaining personal protection for the caregivers. The care isn’t that hard – it’s about providing IV fluids. But it’s hard to get caregivers to safely put in an IV line, and when people become delirious, it’s hard to get people to stop pulling out those IV lines. Centers end up trying to care using oral rehydration salts, but Ebola patients can lose 10 liters of fluid a day, and that cannot be replaced with oral rehydration.

One path towards technological innovation would be finding better ways to track fluid and electrolyte status. That generally involves frequent blood draws, which puts healthcare workers at risk. One possibility is using a transdermal microneedle sensor, which was initially designed by a US scientist to monitor dehydration in athletes. The inventor has been completely willing to deploy it in new contexts, and Dr. Murray sees this as a great example of moving useful technology into a new context.

Another problem is ensuring dignity and comfort by allowing access to relatives. This is a problem that’s especially acute in treating children. Most children under 12 who’ve contracted the disease have died. It’s very challenging to convince people to pass their sick children off to people in space suits to go off and die. As a result, people hide from the ETUs and CCCs. We need better tools, possibly digital tools, to let parents and children connect.

It’s critical for Partners in Health to ensure rapid learning by optimizing data collection and management tools, Dr. Murray explains. We need to capture all the information from these cases, but it’s incredibly hard to build data collection tools that work with three pairs of gloves on. Right now, systems rely on holding up pieces of paper to windows for transcription – voice activated systems would be a strong step forward.

Stopping the disease will ultimately require accurate and early diagnosis. “If we could diagnose in the field before it was symptomatic, we could stop the epidemic.” Dr. Murray lists some promising directions: immuno-assays using antigen capture and antibodies, tests of nucleic acid amplification, viral culturing, and novel methods, like a single particle interferometric reflectance imaging sensor. Right now, current tests require lab facilities, take 2-6 hours, and might need more blood than you can get from a fingerstick. We need something that requires a finger prick and can be processed at peripheral sites.

There are promising new drugs and vaccine candidates. Three vaccines are in testing – two are single dose, another is double dose and may provide stronger protecting. New treatment protocols include ZMAPP, a cocktail of 3 monoclonal antibodies, originally engineered in tobacco, and being produced now in yeast. One possible treatment is a drug for flu, currently stockpiled in Japan, which has gone through safety and tolerability trials, and can now go into efficacy trials. Most other candidates have not yet been tested for safety and tolerability.

One promising development are BSL4 labs – biocontainment labs – built in shipping containers and delivered on tractor trailers. Unfortunately, most of the roads in rural areas cannot accomodate those trucks, and it can take 13 hours on terrible roads to travel from peripheral sites to a city.

Until we’re at a vaccine – and especially, an aerosol vaccine which wouldn’t require needle sticks – Partners in Health is looking to build a flexible data base and IT platform that captures knowledge, to build a network of partners in industry, research and funding agencies, and to support local research infrastructure through training.

Joi introduces into the conversation the idea that popular response in the US to Ebola has been to suggest locking down our borders. Instead, we need more volunteers to come into these countries and lend a hand. Dahl tells us that more than 1000 people have volunteered to come to West Africa, despite the fact that quarantines mean this could be a 6-10 week commitment. Locking down borders is making it harder for nurses, logisticians and lab workers to volunteer.

David Sengeh suggests we need to think beyond the immediate problems of the disease and into the broader issues that countries like Sierra Leone face. He notes that Sierra Leone has a population where 70% of citizens are under 30, and where young people already have a challenge accessing a quality education. Add to this the closure of schools and Sierra Leonean youth are facing a future that’s short on opportunity. David shows us a video made by a teenager from Sierra Leone that addresses discrimination and ostracizing that often happens to Ebola survivors. Helping people make media and address these prejudices is a key strategy.

We end up in a discussion between the audience and the stage about whether the Media Lab could be a collaborator with Partners in Health on addressing issues around Ebola. Joi pointed out that the lab is trying hard to work on codesign strategies, where we don’t design technology and drop it into communities, hoping it will work, but work with communities to identify problems and design solutions. It’s possible that the Media Lab might work to support hackathons and other efforts in Liberia or Sierra Leone, or that nurses and other health workers who’ve worked in the field could work with the Lab on issues like cooling systems for personal protection equipment or non-invasive blood drawing techniques. Mask fogging, one of the most serious problems with protective equipment, is a problem Joi identifies as well-known to the SCUBA community, and he wonders whether techniques from that world could work for Ebola protection.

The challenge, Dahl reminds us, is not just innovation, but deployment. One of the major tools used to combat Ebola is chlorine bleach, which is used to sterilize surfaces and people who’ve taken off their protective equipment. Someone had the bright idea of dyeing the bleach solution pink, so that people could see where they’d bleached off and where they hadn’t reached. Solving these problems is a first step – getting them widely adopted in the field is the key to saving lives.


The crew at Civic has a great liveblog of the event – check it out!


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