Beyond the Hot Zone: A Deeper Look at the Promise of Technology Inside the Ebola Outbreak in the Democratic Republic of Congo
A recent piece in TIME details the status and personal stories of the Ebola outbreak in the Democratic Republic of Congo (DRC) and, most recently, Uganda. The story has become familiar but no less sad. A horrible disease with a fatality rate that ranges from 25% to 90% in recent outbreaks, depending on availability of treatment and the strain of the virus, is essentially raging unchecked in the DRC.
From past experience, we know that responding to an Ebola outbreak is complex. The disease often resembles other endemic diseases-such as malaria-in its earliest presentations of headache, fever, weakness, fatigue, muscle pain, diarrhea, vomiting, and abdominal pain, which makes early diagnosis rare and puts frontline health workers and family caregivers at great risk of infection. The 21-day incubation period, during which symptoms can be occult or mild, further enables far-ranging transmission by potential carriers/infected persons, especially in highly mobile peoples.
In addition to these challenges, the regions in which the virus tends to emerge are mostly underdeveloped nations with weak or struggling medical infrastructure, which are therefore poorly equipped to handle the outbreaks without outside aid. This outside help itself then becomes both a blessing and curse, as well-meaning non-governmental organizations (NGOs) stream into the regions bringing resources and foreign faces that feed fear and mistrust among peoples who have little reason to assume that those with power will use it to help them. This chart, taken from the June 11, 2019 World Health Organization (WHO) update, tells the story of an outbreak that continues to get worse.
As bad as this looks, even more concerning is the fact that most of the currently identified cases are not part of a known transmission chain. The virus is running wild among the people of the DRC; it is likely that many cases are not being identified, particularly in recent weeks; and many of the people working in the field fear that it will soon reach major cities, where the risk of exponential spread is high.
One of the greatest gifts of my professional life has been the privilege of working extensively in the field of global health. I have spent significant time in the Middle East and North Africa working to bring and enable cancer care. I have worked in Bangladesh on projects supporting refugees and in 2014–2015, I worked in Sierra Leone in support of Ebola efforts with several international NGOs. The largest Ebola outbreak ever ended with more than 28,600 cases and 11,325 deaths. As an engineer and scientist, my role is not direct patient care but to develop processes and digital systems for safe, effective, and ethical humanitarian and emergency response.
During the 2014–2016 outbreak, I worked to enable data management and patient care under biosafety level 4 (BSL-4) conditions. I was in the field with Partners in Health supporting their direct mission but partnered closely with Médecins Sans Frontières (MSF) on their comparable effort, called Buendia. Buendia was a comprehensive electronic health record system built specifically for the Ebola treatment workflow. The system consisted of ruggedized and chlorine-proof tablet casings, its own wireless networking system that could run off a motorcycle battery for several days, and the software to drive it all. The challenge was massive and can be best understood by this BBC World News video describing the MSF project and by the F1000 paper we published on lessons learned. You can also access this transcript [log-in required] from an American Medical Informatics Association (AMIA) panel that brought all of the teams together to discuss lessons learned.
The challenge of data collection and patient care in Ebola treatment centers is daunting as the working conditions including the stifling and claustrophobic personal protective equipment (PPE), the constant moisture from humidity, and the chlorine that constantly bathes everything, as well as the inherent tension of the dire medical situation make traditional clinical data management impossible. On the ground, the most frustrating aspect to clinicians is the unpredictability and heterogeneity of the clinical presentation and disease course. Patients that appeared to be at death’s door would recover, sometimes rapidly, and those who appeared ready for release would succumb and perish within a few hours.
The lack of detailed medical records and case report form data fueled the frustration. The picture at right is one that I took of data collection within an Ebola treatment center (ETC). That was it: those cards and that grease board. Clinicians and healthcare workers must enter the ETC starting with the quarantine area and pass through the confirmed patient wards. No sharp objects are allowed in the ETC and paper cannot be carried out. Workers must perform complex care and tasks and must try to remember every data point and observation along the way. Even verbal transmission of data is problematic due to the two-way sound inhibition of sweat and chlorine-soaked PPE.
Three years later and here we area again. Ebola is spreading in the DRC in a situation that is greatly complicated by civil unrest that has led to 130 attacks on aid and healthcare workers. Nonetheless, those who care and live by their mission to support those in need, even in conflict zones, are back in the fight and need our support. Several months ago, the MSF field team reached out to the original Buendia Team, led by my good friend Ivan Gayton (@ivangayton) whom you met in the BBC video above. The team asked if the system could be brought up to date and made available for use in the current epidemic. Ivan quickly got his partner Ka-Ping Yee and the band back together and sprang into action, as is his way. Shortly after, I joined the team as chief science officer, advisor, and fundraiser. We landed our first donations, assembled a team, and are currently preparing to bring the system to Geneva for testing and evaluation by field medical staff under BSL-4 conditions.
The Buendia team and project is a bootstrap effort but one that offers a great deal of hope. In addition to MSF, the other NGO doing Ebola care, alima-ngo.org, would also like to test/use the system as soon as it is available. We expect successful test cycles in the next 2 weeks and the first pilot use in the DRC is likely to follow very shortly thereafter. We hope that these technologies will not only aid in patient care, but that they will also provide the first truly detailed longitudinal medical records of Ebola treatment. We will do everything we can to realize this promise.
Unlike the 2014–2016 outbreak, the response is not being enabled by a Public Health Emergency of International Concern (PHEIC) declaration despite more than 2100 confirmed cases and at least one known border crossing into Uganda. I could write how I feel about this, but an editorial in Lancet yesterday says it better than I could. A PHEIC declaration would have raised the levels of international support, enhanced diplomatic efforts and security, and released more financial resources to support the response teams in the region. The editorial goes on to correctly call the lack of a PHEIC declaration more political than technical, and a mistake. I could not agree more. The release of funds and the global mobilization that eventually aided the stop of the West African outbreak are needed again. Hopefully, reason will prevail soon. The international cooperation that I witnessed in 2015 was truly stunning. Medical NGOs and local ministries of health provided care. The World Food Program kept us fed and provided helicopter transport. The British military police managed communications, ambulance transport training, and security. The Dutch flew an Ebola-lab-in-a-box into the jungles of Kono in Sierra Leone to shorten the time it took to get Ebola diagnosis test results. Oxfam also provided support and additional food. Tech companies provided phones and tablets. It was inspiring and effective, and it is all needed again.
Coincidentally, late last month, National Geographic ran a six-episode mini-series based on Richard Preston’s excellent book The Hot Zone, which details the origins of the Ebola virus. Of course, I had to watch it. I was not disappointed. Overall the series was reasonably well done with minimal over-dramatization or variation from truth and accuracy. The pleasant surprise was the accompanying documentary that they aired more or less as an epilogue: Going Viral Beyond the Hot Zone. This hour-long piece provided a detailed account of the 2014–2016 West African Ebola outbreak and a solid representation of the beginnings of the current epidemic in DRC. The stories are accurate, reasonably comprehensive, clear, and human as they weave the stories of Ebola responders and survivors throughout the tale. Evidence of the excellence of the background research is the inclusion of the amazing Dr. Nahid Bhadelia (@BhadeliaMD), whom I was lucky enough to have as a housemate and teacher on my first mission, and Dr. Adaora Okoli (@DrAdaora), herself an Ebola survivor. I will not release any further spoilers other than to say that what I appreciated most was that the producers of this documentary correctly captured the spirit of Ebola fighters. Enjoy the show, at least the documentary. It is worth the watch.
I hope that world is lucky and will always have courageous and committed NGOs like MSF and ALIMA that will not shy away from providing medical care to those in need, even in the most volatile conflict zones. And I hope that those organizations are lucky enough to have individuals, like the ones I have introduced you to in this blog, who are ready to drop school or jobs and part with family to ensure that this horrible disease affects as few people as humanly possible. After all, despite the often-sensationalized media portrayal, Ebola virus disease is just that, a disease, and the victims are simply sick people who are worthy of the best care we can provide.
I will update you in a few weeks with our progress and I want to thank those of you that have gotten us this far.
Onward.
- Eric, Ivan, Ping & the Buendia Team See more blog posts by Eric Perakslis
Originally published at https://forge.duke.edu on June 11, 2019.
