Crucial to understanding the impact of our work on individuals, families, communities and countries around the world is collecting and analysing a range of data. These data may show us what is working well, what areas need more investment, but also who our services are reaching.
Disaggregated data means breaking down into smaller parts or units of data. For example, disaggregated data may show the percentage of men and women, age group, ethnicity, income or location of people who receive leprosoy services. For example, sex-disaggregated data are data collected and analysed separately for men and women. By breaking down the data we collect and analyse into smaller units of data, we can see at a more detailed level who or what subgroups of people our services are reaching.
The importance of detailed information
Collecting information across subgroups (such as age, gender, income, family situation, location and type of disease) helps us understand exactly who our services are reaching. People in some subgroups may be disadvantaged or have special needs, so we need to specifically count them in order to know if our work to stop transmission, prevent disabilities and tackle discrimination is actually effective for everyone. Data is disaggregated to reveal underlying trends, patterns and insights.
We asked Pim Kuipers, ILEP Project Coordinator and Associate Professor at Griffith University, Australia, and Afliana Lisnahan (Nona) Reis, The Leprosy Mission Country Leader in Timor Leste, to explain how detailed data is key to achieving Zero Disabilities.
What is disaggregated data?
Pim: It is the way we make sure that vital and detailed information is being collected about people in our services, which can be broken down into specific subgroups.
Why does it matter?
Pim: Collecting information across subgroups (such as age, gender, income, family situation, location, type of disease, etc) helps us understand exactly who our services are reaching.
Nona: People in some subgroups are disadvantaged or have special needs, so we need to specifically count them in order to know if our work to stop transmission, prevent disabilities and tackle discrimination is actually effective for everyone. In Timor Leste, the staff are very proud of the work they do to make sure the data are accurate and meaningful.
Who collects the data? How is it shared?
Nona: In Timor Leste and some other countries, simple paper-based forms are used. Elsewhere there are electronic databases, but generally project staff, clinic or hospital staff try and get all the relevant details from people when they have been diagnosed or are involved in programmes. While respecting confidentiality, most service providers pass relevant detailed information to government officers and then to the WHO for their global reporting. (So the data are included in global statistics and summaries).
What could this mean for efforts to eliminate leprosy?
Pim: We want to make sure that our work doesn’t leave some of the poorest and most vulnerable people behind. And of course when our work is of real benefit, we want to understand how it helps all different types of people affected by leprosy.