Summary: This report examines the lack of statistical information around the health outcomes of women from indigenous and other marginalised ethnic and cultural groups within developing countries.

Increased access to information on health and poverty has the potential to improve understanding in order to address the health inequalities faced by marginalised groups. Reliable and disaggregated data can ensure that no sections of society are overlooked in the efforts to achieve the Millennium Development Goals (MDGs) and whatever goals are set in a new development framework beyond 2015.

At present there is a dearth of reliable health data broken down by ethnicityi in the poorest countries and the consequences for women from marginalised groups are potentially catastrophic.

This report is part of our ‘Mothers on the Margins’ campaign to improve indigenous women’s maternal health but goes beyond it to call for disaggregated data for all indigenous people and those from cultural minorities such as pastoralist communities in Africa.

Across the world Health Poverty Action works in partnership with poor and marginalised communities – such as cultural minorities and indigenous peoples – enabling them to access culturally appropriate, local and affordable health care. Citing examples from some of the countries where we work – Ethiopia, Namibia, Laos and Guatemala – this report explains why the lack of data matters and considers the extent to which health data is, and is not, currently broken down within national health statistics and major international health surveys.

It goes on to explore the barriers to breaking down health data by ethnicity, and how these may be overcome. Finally we make recommendations for action by governments, international institutions, donors and NGOs.

Unless breaking down health data by ethnicity becomes the norm, the true health situation of some of the world’s most marginalised people will continue to be dangerously concealed. There can be no more delay. It is time for the most marginalised communities to be counted.

Helen Sanderson writes: We believe that all people regardless of age or circumstance should be treated as individuals and should feel empowered to have choice and control over their own lives.

We believe that employees work better if they feel listened to and understood; that supportive teams are more cohesive – achieving  better results; that school children thrive in an environment that encourages and celebrates individuality; that patients in hospital will have a stronger sense of wellbeing and a better recovery with a personal approach to their care.

Since first developing the concept of a one-page profile in 2004 to help improve understanding between my daughter Laura and her teachers at school, I have advocated their usefulness in all areas of life and work.

At Helen Sanderson Associates we use profiles in our work with people in health, social care, education, communities and families. We use them in our personal lives too and we see them as a fundamental part of personalisation and the foremost way of keeping a person at the centre of all decision making regardless of their circumstance.

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