Abstract
Along with inadequate access to high-quality care, competing health priorities, fragile health systems, and conflicts, there is an associated delay in evidence generation and research from LMICs. Lack of basic epidemiologic understanding of the disease burden in these regions poses a significant knowledge gap as solutions can only be developed and sustained if the scope of the problem is accurately defined. Congenital heart disease (CHD), for example, is the most common birth defect in children. The prevalence of CHD from 1990 to 2017 has progressively increased by 18.7% and more than 90% of children with CHD are born in Low and Middle-Income Countries (LMICs). If diagnosed and managed in a timely manner, as in high-income countries (HICs), most children lead a healthy life and achieve adulthood. However, children with CHD in LMICs have limited care available with subsequent impact on survival. The large disparity in global health research focus on this complex disease makes it a solid paradigm to shape the debate. Despite many challenges, an essential aspect of improving research in LMICs is the realization and ownership of the problem around paucity of local evidence by patients, health care providers, academic centers, and governments in these countries. We have created a theory of change model to address these challenges at a micro- (individual patient or physician or institutions delivering health care) and a macro- (government and health ministries) level, presenting suggested solutions for these complex problems. All stakeholders in the society, from government bodies, health ministries, and systems, to frontline healthcare workers and patients, need to be invested in addressing the local health problems and significantly increase data to define and improve the gaps in care in LMICs. Moreover, interventions can be designed for a more collaborative and effective HIC-LMIC and LMIC-LMIC partnership to increase resources, capacity building, and representation for long-term productivity.
Highlights
Why Do We Need Contextually Relevant Data From LMICs?Low- and middle-income countries (LMICs) encompass 92% of the global disease burden [1], and yet are severely lacking in resources to manage complex care
The disparity of disease burden to resources available is daunting, i.e., high-income countries (HICs) has over 100 times more cardiac surgeons than LMIC, and while there are more than 4,000 cardiac centers worldwide, only one center per 10 million population exists in LMIC [2]
As highlighted in the theory of change (ToC), the path begins with national ownership at the top leading to empowerment of the LMIC
Summary
Low- and middle-income countries (LMICs) encompass 92% of the global disease burden [1], and yet are severely lacking in resources to manage complex care. It is imperative to recognize the barriers to conducting research and availability of data in LMICs so that systemic solutions can be designed to address them These barriers can be broadly classified as following: Competing Public Health Priorities Leading to Inadequate Funding and Resources for Complex Care CHD Research. There is an increased preference for publishing research conducted by the developed countries of the Global North [31] This disparity was further aggravated amongst leading female roles from LMICs, encompassing only 4% of leading female editors belonging from LMICs amongst the top 12 health journals [31]. Impact: Improved evidence generation and contextual research for optimal CHD care N (%): Increase in available health outcome metric datasets, increase in number of papers on data from LMIC authored by investigators from Global south. Increase in the number of publications and citations from LMICs lead investigators
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