On Thursday 21 May a new report will be launched in the UK by development think tank ODI. Entitled 'Data Revolution: Finding the missing millions', the report looks at the challenges around what we know - and crucially what we don't know - about the poverty levels and other development outcomes of millions of people worldwide.
The ODI report highlights, for example, the fact that as many as 350 million people worldwide are not covered by household surveys. As the report notes, the absence of such large swathes of the poor and marginalised from national statistics does not just impede knowledge about progress towards ending poverty; it impedes tackling poverty per se.
Health Poverty Action has long been concerned with the fate of these so-called "missing millions" who include many of the communities we work with in parts of Africa, Asia and Latin America. These are communities on the margins - discriminated against, disenfranchised and often missing completely from the national picture of health and poverty. Many of these communities are indigenous or ethnic minority groups.
Communities like the San in Namibia. From the evidence that exists, there appears to be significant disparities between the semi-nomadic San people and other parts of the population in this southern African country. A UNDP report found that, while Namibia's German-speaking population had a life expectancy of 79 years, the San's was just 52. In addition, the San's Human Development Index is just one third of the rest of the population.
Health Poverty Action has been working alongside the San in parts of Namibia for decades. In the North Eastern region of Tsumkwe the San face high levels of HIV/ AIDS, TB and malaria. Uptake of antiretroviral drugs for HIV is low, treatment to prevent mother-to-child HIV transmission lags behind the rest of the country, while deadly drug-resistant strains of TB have spread as a result of the regular failure of sufferers to complete lengthy, complex courses of treatment.
Many are trapped in a cycle of poverty and poor health. They cannot easily be reached with conventional health service models, have little representation in government and often feel they have little or no say in public services such as health.
And yet published health surveys do not provide information about health outcomes by ethnic group in Namibia. Health data collected by the government does not include information about ethnicity, and while Namibia's 2005 Demographic Health Survey (DHS) obtained the requisite information to make a sophisticated analysis of language groups, like the San, against health indicators, it did not publish this information.
Data Revolution points to a transformation in the amount of data and its availability and use in tackling poverty. As part of this transformation, data needs to be disaggregated both in collection and analysis, and within periodic surveys (such as national censuses and DHSs) and routine service point data such as the HMIS. Knowing more about the poorest and most marginalised people amongst a national population could enable better targeted services and better outcomes for those groups. Exposing hidden trends increases understanding of policy makers and programme implementers about specific vulnerable groups and enables better evaluation of whether interventions are having the desired (or other) impacts.
However, while this could be a positive development for the San and minorities like them, concerns have been raised about a potential 'dark side' of the data revolution. Knowledge is power. If a data revolution is coming, it could be good news for a powerful elite of statisticians and the political and economic leaders they serve, or it could be good news for citizens everywhere.
In societies where discrimination and prejudice continue to be rife, it is not surprising to learn that many people from indigenous or marginalised ethnic groups can be reluctant to identify themselves with a particular ethnic identity. Themes of the ODI report around surveillance, privacy and data ownership are particularly pertinent to ethnic minorities and indigenous groups. There are steps that can be taken to mitigate these obstacles, such as conducting outreach with communities on the benefits of being involved in data collection, and taking a participatory and culturally sensitive approach to surveys, from design to dissemination, but these challenges must be acknowledged from the outset.
Similarly the report picks up on new trends in data - big data and informal sources of data and the exciting opportunities these present for citizens to participate in the creation, access and analysis of data. These trends again could be significant for minority groups if they can be included in these processes, and Health Poverty Action is exploring their use with some of the communities with whom we work.
Most commentators agree that the Millennium Development Goals which expire this year have failed to address these kinds of issues. The Sustainable Development Goals that are planned to replace these after 2015 aim to 'leave no one behind' and commit to a 'data revolution' to ensure these groups are counted. Much effort will be needed at every level in the months and years to come to translate well-meaning words into reality.