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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