Unni Karunakara, a former president of "Doctors without borders", gave a talk at International Data Week 2016 on September 13 about the role of data in humanitarian organizations. The talk was very powerful in its simplicity and urgent need for better data and its management and dissemination. It was a story of human suffering, but also a story of care and integrity in using data to alleviate it.
Humanitarian action can be defined as moral activity grounded in the ethics of assistance to those in need. Four principles guide humanitarian action:
- humanity (respect for the human)
- impartiality (provide assistance because of person's need, not politics or religion
- neutrality (tell the truth regardless of interests)
- independence (work independently from governments, businesses, or other agencies)
These principles affect how to collect and use data and how to ensure that data helps. Data collected for humanitarian action is evidence that can be used for direct medical action and for bearing witness, which is a very important activity of humanitarian organizations:
“We are not sure that words can always save lives, but we know that silence can certainly kill." (quoted from another MSF president)
Awareness of serious consequences of data for humanitarian action makes "Doctors without borders" work only with data they collect themselves and use stories they witnessed firsthand. Restraint and integrity in data collection is crucial in maintaining credibility of the organization.
Lack of data or lack of mechanisms to deliver necessary data hurts people. Thus, in Ebola outbreak it took the World Health Organization about 8 months to declare emergency and 3000 people died because data was not available in time or in the right form. The Infectious Diseases Data Observatory (IDDO) was created to help with tracking and researching infectious diseases by sharing data, but many ethical, legal, etc. issues still need to be solved.
Humanitarian organizations often do not have trustworthy data available, either because of competing definitions or lack of data collection systems. For example, because of the differences in defining "civilian casualty" numbers of civilians killed in drone strikes range from a hundred to thousands. Or, in developing countries or conflict zones where census activities are absent or dangerous, counting graves or tents becomes a proxy of mortality, mobility rates and other important indicators. Crude estimates then are the only available evidence.