Collecting and using data on persons with disabilities: key steps
Data on persons with disabilities need to be collected at each phase of the humanitarian programme cycle. The following keysteps should be taken at each phase:
-
Identify information needs
What is the question that needs to be answered or the decision that needs to be made? Consider why data are being collected on persons with disabilities. Purposes might include: to understand the impact of a crisis; to identify barriers that prevent persons with disabilities from accessing assistance; to map resources and capacities. The purpose of data collection should determine what types of data are collected.
-
Identify sources of (secondary) data on persons with disabilities
What information is needed to answer the key questions? Always start with information that is already available.
- Make use of official data sources, such as government databases, international monitoring mechanisms (including the reports by UN human rights treaty bodies, Special Procedures of the Human Rights Council and Universal Periodic Reviews, the High Level Political Forum for Sustainable Development, and reports of the UN Secretary- General), and information compiled by humanitarian actors, development projects and OPDs. (See Annex 3 for a more detailed overview of secondary data sources and their use.)
- However, it is important to recognize that these figures may significantly underestimate the number of persons with disabilities and may not accurately describe their needs, views and priorities. It is therefore necessary to evaluate the quality, robustness and completeness, as well as comparability, of secondary data on persons with disabilities. (See Annex 4 for advice on how to evaluate data on persons with disabilities.)
- The situation may also have changed since the secondary information was collected. In particular, it may have changed as a result of the humanitarian crisis, especially where large numbers of people have been displaced. The number of persons with disabilities, and their proportion in the population, frequently increase as a result of crises, because these disrupt services, create new barriers, and cause injuries and psychological stress.
-
Fill critical information gaps
- Include questions relevant to persons with disabilities in needs assessment tools and monitoring and evaluation processes.
- Conduct separate data collection exercises that focus on persons with disabilities where it is relevant and feasible to do so. Separate collection can be particularly valuable when analysis has flagged that persons with disabilities experience specific risks or accessibility gaps.
- Additional data enables the response to understand problems in more detail. It is very important to involve OPDs in such work.
- Put in place appropriate protections when collecting, analysing, storing, sharing, using, destroying or archiving sensitive personal data. Refer to the section on managing data and information in Professional Standards for Protection Work.
See the section on Needs assessment for more detailed guidance