Abstract
BackgroundNon-governmental organisations (NGOs) collect and generate vast amounts of potentially rich data, most of which are not used for research purposes. Secondary analysis of NGO data (their use and analysis in a study for which they were not originally collected) presents an important but largely unrealised opportunity to provide new research insights in critical areas, including the evaluation of health policy and programmes.MethodsA scoping review of the published literature was performed to identify the extent to which secondary analysis of NGO data has been used in health policy and systems research (HPSR). A tiered analytical approach provided a comprehensive overview and descriptive analyses of the studies that (1) used data produced or collected by or about NGOs; (2) performed secondary analysis of the NGO data (beyond the use of an NGO report as a supporting reference); and (3) analysed NGO-collected clinical data.ResultsOf the 156 studies that performed secondary analysis of NGO-produced or collected data, 64% (n = 100) used NGO-produced reports (mostly to a limited extent, as a contextual reference or to critique NGO activities) and 8% (n = 13) analysed NGO-collected clinical data. Of these studies, 55% (n = 86) investigated service delivery research topics and 48% (n = 51) were undertaken in developing countries and 17% (n = 27) in both developing and developed countries. NGOs were authors or co-authors of 26% of the studies. NGO-collected clinical data enabled HPSR within marginalised groups (e.g. migrants, people in conflict-affected areas), albeit with some limitations such as inconsistent and missing data.ConclusionWe found evidence that NGO-collected and produced data are most commonly perceived as a source of supporting evidence for HPSR and not as primary source data. However, these data can facilitate research in under-researched marginalised groups and in contexts that are hard to reach by academics such as conflict-affected areas. NGO–academic collaboration could help address issues of NGO data quality to facilitate their more widespread use in research. The use of NGO data use could enable relevant and timely research in the areas of programme evaluation and health policy and advocacy to improve health and reduce health inequalities, especially in marginalised groups and developing countries.
Highlights
Non-governmental organisations (NGOs) collect and generate vast amounts of potentially rich data, most of which are not used for research purposes
We found examples of the use of NGO-collected clinical data and NGO administrative and other types of data published by researchers without any connections to NGOs
We have argued that given the scale of health NGO operations worldwide, NGO data constitute a vast and valuable source of data for Health policy and systems research (HPSR)
Summary
Non-governmental organisations (NGOs) collect and generate vast amounts of potentially rich data, most of which are not used for research purposes. Within the context of HPSR, NGOs necessarily produce data on the services and programmes they deliver, collect data on the (often marginalised and hard to reach by researchers) recipient populations and the health conditions being treated [10, 11]. These data can be patient records for populations who do not access national healthcare, administrative data on the number of drugs dispensed or days that patients spent in NGO-run healthcare facilities, data on community responses to health crises (e.g. in the aftermath of extreme weather events), or reviews of health policy [12]. NGOs are only rarely collecting data for the purposes of research, the records and data held by them are a vast (and largely untapped) source of potentially rich data [6]
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