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

Abstract

<jats:p>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.</jats:p><jats:p>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.</jats:p><jats:p>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.</jats:p>

The epidemiology of pediatric traumatic brain injury presenting at a referral center in Moshi, Tanzania

“…Within the pediatric TBI population at KCMC, we found a male-to-female ratio of about 2:1. Our findings are relatively consistent with the literature in Sub-Saharan Africa, which reports an average male-to-female ratio of 3:1 [ 29 – 34 ]. Males may be more prone to risky behaviors that lead to injuries possibly due to gender roles [ 35 ].…”

“…RTI was by far the most common mechanism of injury, accounting for 64.4% of all patients in this study, which is comparable to global estimates. Reported percentages of RTI in children with TBI range from 48.3% in the Royal London Hospital to 53.3% in a Nigerian tertiary hospital and 60.7% in a tertiary center in Malawi [34,45]. One study estimating the global incidence of TBI found that the overall proportion of TBI resulting from road traffic crashes (RTCs) to be approximately 56% [10].…”

“…Childhood injuries account for nearly 10% of the total pediatric burden of disease worldwide, 84% of which are unintentional [ 1 ]. Among unintentional injuries, traumatic brain injuries (TBIs) [ 2 ] are the most frequently occurring injury in children under 15 years of age globally [ 1 ]. Global deaths due to injuries are projected to increase by 28% between 2004 and 2030 [ 3 ].…”

Understanding the barriers and facilitators to trauma registry development in resource-constrained settings: A survey of trauma registry stewards and researchers

“…Barriers relating to both staffing and funding the trauma registry emerged as the first and second most common issues from respondents respectively, and is supported readily by papers that have documented or reported on their individual experience of trauma registry implementation [22][23][24][25][26] . A study by O'Reilly et al (2016), which reported the lessons learned of trauma registry development in both HICs and LMICs similarly identified both funding and staffing challenges as key topics to surface in their interviews with trauma registry custodians.…”

Maximizing the potential of trauma registries in low-income and middle-income countries

“…[22][23][24] For some trauma registries, government instability and a rotating cast of stakeholders within the respective Ministry of Health have made it challenging to disseminate their findings, especially if the value of injury surveillance research needs to be re-cultivated among the new cohort or if authorities only want results that confirm their administrative or political performance. [25][26][27] For other registries, especially those strongly driven by foreign collaborators, there is a possibility that publication in the scientific literature is given higher priority than efforts to disseminate results more locally. 25 28 The "publish or perish" paradigm retains a strong hold over many academic researchers that may, in some cases, overshadow efforts to disseminate the data with local stakeholders.…”