Playing Data Catch-Up
Each type of emergency has its own profile. Floods cause massive property damage and displace large numbers of people. Tsunamis leave few survivors or injured victims but an enormous amount of property and ecological damage. Earthquakes tend to result in both a large number of deaths and a large number of orthopedic injuries.
It is our instinct, and I believe a correct one, to focus on locating and assisting injured survivors in the immediate aftermath of an emergency. The 2010 Haitian earthquake is no exception. There are numerous heart-wrenching stories of children and adults being pulled from the rubble many days after most had given up hope on finding survivors. Once rescued, the survivors require acute medical attention. Longer-term issues can be safely pushed off on logisticians in during the first few days of response as physicians do their work with the injured.
The disease surveillance module in the EMR we built in Haiti
Most medical teams, however, only remain on the ground for a limited amount of time — until the acutely injured have received triage care. When those teams depart, their patients either transfer to another field hospital or are discharged with instructions to seek medical care in the future. They rarely are left with a record of the medical procedures performed on them during the acute care phase.
More people study disaster response these days than every did in the past. Those individuals usually hit the ground running and are able to keep their cool in the face of chaos. There are many people with wonderful intentions but limited training who also respond to disasters. There’s an odd thing that happens with these individuals: while their professional skills probably would be useful during response operations, many people feel like they need to be directly tangibly helping victims in order to be “helping.” IT experts would rather dig holes and move rubble than work on IT systems and administrators would rather cook food and put up tents than help organize papers. Their intentions are good and their actions are helpful, but their expertise in their own professional arena is what truly is needed, especially during a crisis. Hole-digging and food-cooking are tasks that locals can successfully complete — even with no training — with minimal supervision. It is neigh impossible to find a trained systems engineer or administrative assistant wandering the streets among vulnerable local populations following an emergency, especially in resource-poor setting.
The consequence is that minimal efforts are made to organize information during the first few weeks of a disaster response. Log books start and stop, volunteers rotate in and out, and methods of recording information change on a regular basis. People sometimes track information on their own laptops, but this usually is done in triplicate, each copy full of errors, created without the knowledge of the others who are doing the same thing. I certainly don’t blame non-data types for poor data management, especially during the acute response phase of disaster recovery. They are doing the best that they can in a very difficult environment.
A scrub nurse outside of a mobile OR in Fond Parisien, Haiti
The problem that emerges several months down the line has multiple facets. First and foremost, there are vulnerable children, frequently orphaned, who pass through the medical safety net and find nowhere to land. It is the responsibility of all involved with disaster response to record the presence of these individuals, track their movements, guarantee their safety, and remain with them until they are safely discharged. There is no feeling worse, I can promise you, than receiving a phone call three weeks after discharging an “orphaned” child, only to learn that somebody claiming to be their mother is asking for them at the gate to your field hospital. Well, there is a worse feeling: remembering the child but discovering that you have no record of their visit to your camp, the medical procedures that were performed on them, or their discharge status. Did you just lose a child?
The second major facet to this problem has to do with funding. Funds usually are scraped together in the short term to keep acute operations running. When the media attention shifts, however, and home institutions begin to ask for funding accountability, it is a nightmare to retroactively pull information together. Warehouses fill with all manner of donated goods, some are disbursed, some are stolen, some sit in boxes undiscovered while people yards away desperately need them. Volunteers arrive with large duffel bags full of medicines which are dumped into piles on the ground; some are controlled substances and need to be locked away. It is hard to find a trained pharmacist to assist during emergency response. But when the donors and representatives from funding mechanisms come knocking, they want to know exactly where everything is that was donated to your facility, the condition it currently is in, how you plan to maintain it and where it is when its missing. Writing the 17th draft of an US OFDA funding proposal while trying to manage volunteers and figure out where the patients are, what’s wrong with them, and how you’re going to place orphaned children is a lot for anybody to handle.
These are all reasons why emergency response teams need to consider data management prior to their deployment to the field. When possible, teams should bring dedicated data entry and data management people with them who have the sole responsibility of keeping information organized. That person should curate the single repository of information for the camp and aggregate incoming data from all relevant sources. The data management guru needs to be made aware, prior to deployment, that their job is to keep information organized — not to dig latrines and cook rice.
Information management during a disaster is a day one requirement and its importance is overlooked by many (if not most) teams that deploy during emergency response. When a team waits 3 weeks to bring a data management person to the field, that probably means there will be at least a month’s worth of data lost. From the perspective of a trauma orthopedic surgeon it might not matter. From the perspective of that surgeon’s patients, I can promise you that it does. In Haiti we had dozens of patients who arrived at our field hospital weeks and months after having a limb amputated elsewhere — the stump was infected and they needed care, but they had no medical history. One child arrived on-site 3.5 months after an external fixator was put on her leg following an automobile accident 2 months before the earthquake!
Eirini showing an example patient medical chart
We did our best, in Haiti, to put together a patient tracking system as soon as we could. By the time the hospital closed, we had a database with the medical records of nearly 1000 patients, the pharmacy disbursement records for nearly 7000 prescriptions and the entire stock of the warehouse stored within it. We were able to discharge 200-300 patients with a full print out of their medical history at the camp and a CD with their digital x-ray images on it; for many, it was the first medical record they’d ever had and it was a source of pride.