Liveblog by Alexis, Jude, Ed, Lilia, Alexis, Yu, & Heather
Event description: “Partners in Health and its collaborators on the ground in Sierra Leone, Liberia, and Guinea have been playing a critical role in the fight against Ebola. To date, Ebola has killed more than 5,000 people, and continues to wreak havoc in the region. What are the facts from the ground? What technological tools are lacking that could be used to limit the current outbreak?
Ophelia Dahl of Partners in Health (PIH) will discuss the current state of events on the ground in Sierra Leone and Liberia, and PIH’s response, as well as her recent trip to West Africa. In addition, PIH’s director of research, Dr. Megan Murray, will discuss the Ebola research agenda.”
- Ophelia Dahl – Executive Director of Partners in Health
- Dr Megan Murray – Professor, Harvard Department of Epidemiology
- David Sengeh – MIT Media Lab, @dsengeh
- Joi Ito – Director, MIT Media Lab, @joi
Joi: The first half of the session will introduce PIH and their work on the ground in Africa, and the rest of the conversation will be figuring out if and how the Media Lab community can do something to help. If we do, it must be impactful and actually helpful.
Ophelia: She began this work 32 years ago in Haiti, where she met Paul Farmer and began the work of Partners in Health. It was a small group there and she were executive director of Global Health. It was not easy to jump in the scene. It took far too long to build up the number of partners needed to do this work. She explains that Partners in Health is not a disaster relief organization. They do address the everyday disaster of poverty which affects the health of people.They work in Haiti as well as other countries around the world.
When the earthquake hit Haiti, PIH was the organization that had the platform to address the problem. They had doctors and surgeons in place as well as an existing supply chain to get resources. Now they are a large group with a home team in Boston and 11 other countries around the world. They collaborate with academics and believe it is important to generate new knowledge, and train and teach people.
In West Africa, the Ebola virus is named for a river in Zaire. One of the first outbreaks in 1976 killed around 300 people. Since then, there have been a few outbreaks, but none have had as many deaths or transmissions as the current virus, which began in Guinea and spread to Sierra Leone and Liberia. This infection was spread from the patients to the caregivers, and the patients sought care in other cities so the disease continued to spread.
When we think about Ebola, we think about it as a death sentence because of the high percentage of fatalities. The reasons for these fatalities is underlying weak health systems, as well as our collective failure to treat patients. Those who have gotten the disease here have mostly all survived — those who have not were either diagnosed late or improperly. The proper treatment is not complicated. It’s managing electrolytes, keeping patients hydrated — what we would call really good nursing care.
Ophelia recently came back from Sierra Leone where she talked with survivors and listened to their stories. Most of the survivors were young people who survived because they were in fairly good health. They spent time in holding centers and there were many barriers to their care; these people stayed alive because of a bit of luck and because they were young.
When she talked to all of them, there were no mysterious cases. They all talked in detail about loved ones they had taken care of. This is a disease that is contracted because you are taking care of people (a “caregivers disease”) which is a terrible thing because you don’t want to stigmatize taking care of people.
One way to make help available is to hire these survivors. We have found in Haiti a lot of the time with HIV patients that what they need is a job. We hire them as community health workers (CHWs) and they become great coaches and educators.
The system that was weak and has now collapsed — more people are dying from Ebola rather than of Ebola. Maternal mortality has skyrocketed. There is not a single place that is open for women to give birth to their children. In order to address this you need to have staff, systems, space, and stuff in place. That is what constitutes a robust and redundant healthcare system. She provides the example of the Boston Marathon bombing, where there were many systems in place — in some cases redundant — which helped things go smoothly.
She highlighted two photographs in Liberia, contrasting an old treatment center and a newly built teaching hospital. The teaching center is running smoothly.
The barriers to supportive care are because it’s very difficult to give care in the gear that doctors and nurses must wear. It is hot, cumbersome, difficult to see through, and hard to feel anything with three layers of material. This is one problem that needs to be solved because it prevents them from taking care of people.
Megan: She’s the Research Director at PIH. When developing a research agenda for Ebola, they struggled to know where to begin. Most of PIH’s research focuses on improving care. She discusses PIH’s usual delivery model. PIH intervenes at three levels. ETUs (Ebola Treatment Units) are temporary units. They accommodate people who are sick and need intensive care. PIH provides clinical staff, laboratories, and equipment. At the second level are CCCs (Community Care Centers). When people in the peripheries are suspected of having Ebola, there’s no way to test it. They’ll have to have their blood drawn and sent to a city for testing. There are only a handful of testing sites. So the CCCs are a holding center, where some people have Ebola and other people have other illnesses (e.g. Malaria). PIH’s goal is to have the staff there using the same procedures as they would at the ETUs to prevent the spread of disease.
The very bottom level is to recruit and train people, mainly survivors, to provide hospital level care. Not only primary care but also screen and contact tracing.
Challenges and possible technical solutions
They are trying to improve case fatality rates in ECUs and CCCs by delivering high-quality care while maintaining personal protection.
Ebola has a much higher fatality rate than other illnesses (e.g. H5N1), so they’re trying to deliver quality care while maintaining personal protection. Many people are not getting IVs, and in some cases oral rehydration is replacing IVs, but oral rehydration is not sufficient. In the U.S. care is much stronger; people have IV lines, hookups on the wall providing oxygen, continuous monitoring, etc.
We can’t provide an ICU like that in West Africa right now, but we can think about building other supportive technologies to help.
For example, the Transdermal microneedle sensor was originally developed and used by the military. It is an electrolyte sensor that determines hydration level. PIH has started to look for funding to try to get this to a product stage for use in the field. This is an example of an existing technology that could work for Ebola care if we use them in a creative and innovative way. But, there are likely many other tools out there that could help that we don’t yet know about.
We need to ensure patient dignity and comfort by allowing access to relatives. There are so many terrible stories of parents losing contact with their children because they can’t go into the ICUs, they have to hand off their child to someone in a spacesuit. As a result, people don’t go to ETU’s. Most children under 12 have died of Ebola. How can we arrange for parents and their children to connect? Perhaps there are some electronic models that already exist for this.
Another area of focus is testing and rolling out new drugs. Funding from this has come from funding to prepare for possible instances of bioterrorism. One of the trails in Liberia is to test drugs for other uses such as flu. Most of the more effective drugs are further back in the pipeline and haven’t been tested for efficacy and tolerability.
We need to ensure rapid learning by optimizing data collection and management tools. There are many barriers to data collection either on paper or with computers. Imagine trying to type with 3 layers of latex gloves without being able to speak. People are working on better tools (e.g. paper that can be made wet).
Providing accurate and early diagnosis could enable early detection and allow clinicians to isolate and treat them at a stage where they are likelier to have good outcomes. We want to move from high tech lab to drop-of-blood test such as pregnancy test. Some issues with current tests are that they require labs facilities, take 2 – 6 hours, don’t detect early infection, and require more than a fingerstick of blood sample.
One of the labs that is being used in the field is built in a shipping container. However, it’s difficult to get these units to peripheral sites and out of cities because roads are bad.
Vaccines are also being developed, and there are 3 candidates. How should we trial vaccines? How do we deliver them? Aerosol delivery, as opposed to needle based delivery where blood oozes and brings about more risk, is still a long way away and we’re not there yet.
Our plan is to integrate research and knowledge generation into all our clinical activities and develop relationships with industry partners.
Joi: Before we jump into conversation: you mentioned two issues. The U.S. media response to illness here drumming up fear, and the difficulty of getting volunteers approved by their employers to go to West Africa.
Ophelia: We are leading in the wrong direction. As more people survive the disease here, the fear seems to lessen. At PIH we’ve had an outpouring of support in terms of recruits. Over a 1,000 people have volunteered to go. The key to this is training and capacity building within the country itself, but the other key to this is making sure that it’s easier for people to volunteer. We need to make sure that people are paid and compensated because it’s costly to have people away from work for a long time. Unlike in Haiti, where people can come down for a few days and help and then go back, this requires much more training. Most of the people we are working with and training now however are in-country in Sierra Leone and Liberia.
David: Thanks for the insights on research. I’m interested in two things: the technologies we currently have that are being used and deployed, and improving education. There are incomplete data sets that may be inaccurate, and there’s no real space and oversight for the dissemination of resources to manage the outbreak. How can we understand how the resources are actually helping? We can’t map to the health outcomes. People are doing work in their own silos, I don’t think there’s a coordinated effort. For example, when the government ordered the lockdown, there were many NGOs saying it was a bad idea. There didn’t seem to be much coordination. The education system and infrastructure is also broken. We need to provide quality education for people today to help build up other kinds of infrastructure. David plays a clip of a math lesson from Sierra Leone on the radio. “I think you see the point, it’s painful to listen to.” We need to think of technologies that would make it easy for school going children to learn from home. This is the first chance we have make use of new technologies that could have an impact on education.
Joi: It’s hard to imagine this happening in the U.S. because the care is so good and the infrastructure is in place. We need to start thinking about how to reach the places that are hard to get to, where the infrastructure is not that good because that is where people are really being affected.
Ophelia: The key thing is that building systems takes a long time. The advantage of working in one place for a very long time is that you can see the gains. Not losing heart and not being distracted is key. Things that took PIH 20 years to build, they’d be able to build much more quickly with their current infrastructure and team.
Megan: PIH has realized they can’t address emergencies or medical care without addressing broader social issues. So David’s point about education is well taken. One of our approaches is to provide jobs to people who have been sick, as well as education. We do a lot of education at a higher level than at high school. Our approach to research is that it must be connected to capacity building. We must use it as an opportunity to train local researchers. We can’t bring those systems about without making the investment.
Joi: As we think about what we might do about Ebola at the Media Lab, should we focus on emergency help or capacity building? Is it one or the other?
Megan: We can’t just focus on capacity building. If we have a choice between two facilities, either a tent hospital or a more enduring facility, it’s important to think about what will have a more lasting impact. If it’s going to have the same impact, we want to keep in mind what’s going to be the longer-term approach.
David: As we see hackathons in Boston and NYC — ignore what the word means — we need to see them in Sierra Leone. Where you’re given the space and the opportunity to problem-solve. Where the people involved are learning not just how to use potential solutions, but how to hack it and make it themselves.
Ophelia: It’s a little bit like the argument around treatment and prevention of HIV. It’s a little bit of a temptation to say “Let’s do one or the other.” But you have to do both.
Joi: Sometimes we use the word “co-design” to describe our approach; when we design research, we send students and faculty and we try to work with processes and materials that are there. It helps you get better designs, and people are more likely to adopt the designs if they feel that they are part of the solutions. I wonder if this methodology would work. A lot of times we sit here in Cambridge and design something but it doesn’t work, because the parts aren’t available elsewhere for example. Is there an opportunity to do something like this.
Megan: Absolutely. A lot of physicians have died. The people to be asking “What do you actually need?” are the people in those places today.
Ophelia: The piece not to forget is that there needs to be delivery in this. Through any kind of discovery and development, however great a new vaccine is, making sure it can get to a hundred percent of the population is a key piece of this. Here, the delivery systems are so good, but elsewhere we’d need to able to use community health workers to help disseminate a vaccine for example. We need to make sure that we do work together because PPE devices are available to be fully used and there are great need for better tools.
Joi: David, you’ve been working with a lot of young people in Sierra Leone. Do you think there’s a way to involve those folks in designing things so that we’re not just sitting here guessing?
David: If you design in situ, thinking about distribution is very different. With Global Minimum, we work with young people to engage in creative thinking processes. We’re doing a project called Hack at Home, for students who are staying home. We’re thinking about the way that the media portrays Sierra Leone and Ebola. In our first challenge to the kids, we asked them to create content to represent a message they wanted to send about Ebola.
[David shows a video created by his students about the stigmatization of Ebola survivors]
This boy survived Ebola and is going for a stroll in his community. Other kids are avoiding him because he is stigmatized for having Ebola. This video shows how survivors are not coming to welcoming homes. Another kid explains to them that this kid is a survivor and should be accepted and welcomed. I wanted to show this video because the kid made it in his local language with his mentor.
Joi: In terms of technology, are you engaged with them in the process?
David: It’s interesting because kids use social media such as Whatsapp. It’s about meeting them where they are. It is possible to use tech with them in that way. Megan, have you thought about what the most effective way for people with prototypes at the Media Lab, what is the best way to go from the prototype to engaging with you to bring them out in the field?
Megan: What would be ideal would be not only to engage with us but also with clinicians and providers, community health workers in the field. We have networks of all of these people. Most of them are not on Facebook, especially in rural areas, but these people are a tremendous resource to figure out what is actually needed and iterate on design. It should be feasible, but this kind of design work is not what we usually do. There is a lot to think about.
Joi opens up to questions in the audience.
Audience: My parents are from Nigeria, and I know that Nigeria’s doing pretty well with Ebola. So what can Sierra Leone learn from Nigeria? Is there really that much of a difference between the health infrastructure in Nigeria and Sierra Leone?
Megan: There’s a massive difference between these countries’ health infrastructure. If you look at maternal mortality, for example, Nigeria is doing well compared with Sierra Leone and Nigeria. In Nigeria, 18,000 homes were visited and screened to detect Ebola which had a great impact.
David: In Sierra Leone we had months of not knowing, of denial, of looking at ourselves and saying “it’s under control.”
Ethan: First of all, thank you. This was incredibly helpful in terms of understanding what Partners in Health is dealing with on the ground.
For groups like the ML that are always trying to figure out how to solve problems, problem selection is one of the hardest things that we do. When Joi’s talking about community-based problem-solving methods and co-design, that’s about figuring out what’s the right problem to solve. You’ve given us a phenomenal list of problems that even those of us who have been paying attention to this don’t know about. For example, the problem you highlighted of people not being able to communicate with their families — of parents not being about to communicate with their kids while in isolation. I suspect many people in the building could help address that. To the extent that you can, help us understand what the unsolved problems are — on the clinical level, on the community level, on the community information level. I’m working with a group called PenPlusBytes on the media side in Ghana. Finally, because you guys are working with people who go into the field, is there a way that some of those people could be part of a team here or elsewhere to bring those insights to us?
Megan: That’s something I was thinking about. Couldn’t we bring community health workers into the equation? What do we need? We need incinerators. We need something that cools down PPE so that people can wear it at a hundred degrees. We save so much effort when we go directly to the source. Pulling those people in to the discussion will be a critical part of this. But the greater challenge is to pull people across cultural and technological barriers.
Ophelia: Some of the people who have come back, like nurses, might be good bridges between clinicians and community health workers. Maybe in the recruitment process for finding volunteers, we can identify some people who could come back to help design new technologies. And if you could give us even three or four things to tell them to be thinking about, that would be helpful.
Joi: One thing that might work, if you were going to send a team over we could have a briefing session here to teach how to think about design and manufacturing to prepare them for how to think about these issues once they’re there, and then when they come back we can have a debrief to figure out what they’ve learned and point to potential insights for design. We could use the people going and coming back as our eyes and ears.
Megan: When people ask “what do you need?” It’s hard — I know what the problems are but not the solutions.
Ophelia: The fogging on the masks is a real problem. And the double fogging, if you wear glasses. When we asked people what they did, they said they would go in and do everything that requires any sort of subtlety and nuance in the first 20 minutes. People can only spend an hour in the ETU with PPE on because it’s just too hot.
Joi: There are a whole bunch of companies just focus on fog-proof technologies.
Amy: A lot of the conversation has been about improving the systems for improving care, but I’m wondering about how much effort is spent in the field on education and equipping people with knowledge to stop the spread of this disease.
Ophelia: We think about generating knowledge both at a high-level and at a community level. Rapid employment and deployment of survivors is one way to spread this information. Making use of community health workers is a key way to educate.
Matt Carroll: This may just be from watching too much news coverage, but it seems like the response from Western countries and organizations has been kind of chaotic over there. Is that the case from your impressions?
Ophelia: I think that we at Partners in Health are used to, and somewhat spoiled by, being able to get things done quite quickly, with some nimbleness, because of the relationships we’ve formed over time. And it’s hard to see so many groups, all well meaning, in a jumble.
It’s difficult to have a tangle of groups and get things done quickly. Some of the groups that have been able to get things done have been organizations like MSF, which works independently. It’s harder if you want to integrate with existing systems. There’s chaos borne of infrastructure and in-country challenges, as well as bureaucracy that occurs during emergencies which can be frustrating.
Audience: There are two open innovation challenges related to Ebola, one with USAID, so people are trying to solve these problems in creative ways.
Ophelia: The results of these challenges are interesting. Chlorine is used to disinfect parts of the protective gear and equipment. There was the suggestion of making it colored, so that you could see areas that hadn’t been doused with chlorine. There’s a difference between imagining it and developing it and then getting it through customs and then getting it out of the capital city to the places where it needs to be. This shouldn’t be so hard — it should be doable. Part of that is developing it in the countries themselves.
David: There are two kind of technologies that should be developed, whether it is from challenges or those from the ground. There are those we have to build from there, while there are those we can not build from there. For instance, PPT’s would be ideally built from there. It would be much different if done from Sierra Leone, if some of these technologies, and what problem sets we want to attack and look separating the problem sets based on this. People here could focus on those things that require iteration over a long time.
Audience: Does anyone have a sense of the supply chain of getting people and information between here and there? Whether it’s getting through customs, getting permits, etc.
Ophelia: It’s a great question. I’d love you to help us think through some of that. We’re trying to build networks of people embedded in the countries we work in so that things can go smoothly. For instance, we have people working in customs in Haiti. We don’t yet have that in Sierra Leone.
Audience: I appreciate all the attention Ebola is getting, and I think education in West Africa is important, but I think we also need to work on education here. For example, some of my friends here don’t realize that Ebola is only in three countries in Africa.
Megan: Somehow that message isn’t getting out there to people. We’re actually overwhelmed with all of the coverage — we hire people to read the newspapers and sift through the information. There’s just so much information. Why do you think people aren’t getting the message?
Audience: I think a lot of people still don’t understand that Africa isn’t just one big country.
Ophelia: We need to start early then! You’re right — the idea that this can be brought from anywhere in Africa is really a terrible thing. If you’ve got any ideas about how to do that, working on a tool to address that specific issue would be really important.
Joi: This is a perfect setup to promote Ethan’s book, Rewire. What we hoped for the Internet is that it would make it easier for people to care about people who live in other places. But we’re seeing that maybe this isn’t happening, and we need to build tools to make this more likely. That’s a lot of what Ethan is doing at the Center for Civic Media.
David: I was stopped on my way back from Mexico. They asked, “Do you know why you’re here?” “Because I have a Sierra Leone passport? Which I’m very proud to carry, by the way!” So we need to change perceptions here.
As we create solutions we need to think about ways that they help young people in Sierra Leone to learn how to make and build their own solutions. But we also can’t wait any longer to act.