Identifying neurodisability research priorities in resource poor regions

How do we set research priorities for resource-poor countries? Do we base them on known priorities, which are usually developed in Western settings, or do we target local needs and context? Most of us would agree that it should be the latter, but how do we identify these priorities? Jindal et al. present a scoping review setting out the nature and extent of cerebral palsy research in India, using the International Classification of Functioning, Disability and Health (ICF) domains. The process allows assessment of the robustness of the research to determine its suitability for systematic review. The methodology follows the Preferred Reporting Items for Systematic Reviews and MetaAnalyses Extension for Scoping Reviews (PRISMA-ScR). The ICF mapping exercise reveals the gaps in evidence and, thus, helps to set the direction for future research. The study findings are not entirely surprising; biomedical research (i.e. based on body structure and functions) abounds, with a focus on ‘fixing’ and making ‘normal’ using (re)habilitative or medical interventions. There is scant research on participation or environmental/contextual interventions. While this is not unexpected, we need to understand the reasons for it and how research in these settings can be improved. The reasons for a gap in research methodology between resource-rich and resource-poor countries are complex. As in many resource-poor countries, Indian training systems are based on traditional biomedical models, with physicians and physiotherapists predominantly making up the childhood disability workforce. There are very few training institutes for other disciplines. Therefore, the health training strategy needs to shift towards the biopsychosocial models and development of multidisciplinary services. The bigger challenges, however, are the cultural perceptions and societal expectations of a curative model for long-term conditions. An added conundrum is posed by healthcare systems. In India, the wide wealth gap and the poorly funded state healthcare system generates largely privately funded healthcare, where practitioners’ livelihoods are dependent on end-user payment. Biomedical interventions, with or without evidence (e.g. stem cell ‘therapy’), often generate high value returns for individuals and health corporations, thus leading to financial considerations influencing treatment choice. Publication of ‘research’ supporting such interventions creates a demand, even though the intervention may not be evidence based nor clinically indicated. It often generates and perpetuates the myth that the more expensive the intervention the better it must be. In addition, publication of research can often generate validity and recognition. In India, and elsewhere, career advancement often requires a minimum number of publications. This pressure to publish or perish has generated a whole industry of ‘predatory publishing’. Predatory journals have certain characteristics; they tend to be open access e-journals with poor peer review systems, poor transparency, fee-based article processing, and are not indexed in worldwide databases of scholarly journals. In 2014, the industry had over 800 e-journals and published 420 000 articles, the average author fee was $178. Over 75% of the material published in these journals is from resource-poor regions such as Asia and Africa. Admittedly, there are certain genuine difficulties faced by researchers in these countries, such as a language barrier, lack of training in research methodology, and inadequate knowledge of formatting potential publications for reputable journals. It is up to local organisations and the global community to consider how support in these matters can be practically provided to the researchers. Predatory publishing poses a risk to healthcare because it introduces publication bias, generates questionable evidence, influences treatment choices, and poses a significant scientific and ethical threat. This type of publishing needs reining-in through strict regulation if we are to develop a global research community with a shared language and common purpose. Jindal et al. do well to warn us of this menace.