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Disability and data: how we can make progress

Dominic Haslam, September 2015
A close up photograph of someone's hand running over a sheet of braille.

“The SDGs must ensure people with disabilities are included in development efforts”

Data is key to ensuring the impact of the Sustainable Development Goals reaches the world’s most vulnerable people. At an International Disability Alliance meeting in New York, Sightsavers’ Dominic Haslam shared our experience of collecting data disaggregated by disability in our programmes. The blog below is taken from his speech at the event.

This week, Vladimir Cuk, Executive Director of the International Disability Alliance, talked about the need for policymakers to be provided with data, saying: “Arguments that data or statistics on persons with disabilities are difficult to collect, are a thing of the past.”

I couldn’t agree more. And I want to use the area of health, a vitally important service for persons with disabilities, as an example of how we can make progress.

Sightsavers has, for the past two years, been piloting methods for disaggregating data by disability in our mainstream eye health and neglected tropical disease programmes in India and Tanzania. We are using our experiences to build the evidence base to inform our own work, to share with others and to demonstrate the clear case for collecting data – specifically, disability data. This initiative will ultimately serve to make Sightsavers-supported services more inclusive of people with disabilities. In fact, we define quality of service partially as the coverage and accessibility of those services. And we believe this can be done in many parts of the proposed Sustainable Development Goal (SDG) framework.

In the India pilot, we collected data on over 10,000 patients. Early findings show that patients are over 10 times more likely to report a disability when they are asked the Washington Group questions, than when answering the census question. This demonstrates the need for more accurate data on disability at national level as it means more individuals may need services to take their needs into account, in order to benefit from them.

Some key findings

There are different ways to collect data on disability with the Washington Group questionnaire

Approaches to data disaggregation can be found, but need to be tested. Data collectors in small primary health centres can spend a lot more time with patients to ask questions and ensure confidentiality; this is not the case in a busy hospital setting. We are currently exploring other approaches for the hospital setting to test how to avoid issues such as delay and lack of confidentiality.

Integrating the Washington Group questionnaire in existing tools is cost effective

Experience from the pilot shows that to avoid increasing costs and workload, it is essential to integrate the six questions into existing facility processes. Involving stakeholders and data collectors in the design of the tool and translation of the questionnaire increases buy-in and ownership.

Patients with disabilities feel empowered and seek treatment

When asked about their health, patients become keen to talk about their condition and ask where they can seek treatment. Data collectors reported that they are enjoying working with the questionnaire as it allows them to identify persons with disabilities and give them information about existing services they did not know about. One clinic staff member reported: “We are enjoying working with the questionnaire and it is a part of the project that we [are] running now so when we [are] asking the questions patients feel like they are taken care of and that we are here to help them.”

Data collectors become aware of the issues faced by persons with disabilities

Programme managers all reported positive change in attitude towards people with disabilities following the training and recommended having refresher training every six months to share their experiences.

Data on disability can initiate change

When looking at the data, vision centres in India noticed that fewer people with disabilities than they expected were using the service. They are now raising awareness of the service in the community and making sure people with disabilities are aware they can access services and have a right to treatment.

In summary, we believe the SDGs, with their mantra to ‘leave no one behind’, must ensure people with disabilities are included in development efforts. The new agenda currently promises to include people with disabilities, but without effective monitoring systems there is a risk that they will miss out on development progress and on their chance to contribute more effectively to the development of their societies. 

At Sightsavers we believe that disability disaggregation of data could be a small investment that brings long-term change.

By Dominic Haslam, Director of Policy and Programme Strategy at Sightsavers

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