Challenges and opportunities for effective data collection in global neurosurgery: Traumatic brain injury surveillance experience in Malawi

Abstract

Global health research can transform clinical and surgical practice worldwide. Partnerships between US academic centers and hospitals in low- and middle-income counties can improve clinical care at the host institution hospital and give the visiting institution access to a large volume of valuable research data. Recognizing the value of these partnerships, the University of North Carolina (UNC) formed a partnership with Kamuzu Central Hospital (KCH) in Lilongwe, Malawi. The Department of Neurosurgery joined the partnership with KCH and designed a Head Trauma Surveillance Registry. The success of this registry depended on the development of methods to accurately collect head injury data at KCH. Since medical record documentation is often unreliable in this setting, data collection teams were implemented to capture data from head trauma patients on a 24-hours-a-day, 7-days-a-week basis. As data collection improved, pilot groups tested methods to collect new variables and the registry expanded. UNC provided onsite and remote oversight to strengthen the accuracy of the data. Data accuracy still remains a hurdle in global research. Data collection teams, oversight from UNC, pilot group testing, and meaningful collaboration with local physicians improved the accuracy of the head trauma registry. Overall, these methods helped create a more accurate epidemiological and outcomes-centered analysis of brain injury patients at KCH to date.