Sightsavers blog

Tackling the challenges of data disaggregation

Emma Jolley, May 2014

“Before we can count people with disabilities, we have to agree what we are counting.”

In March, my colleague Pauline wrote about the need for more and better quality data on disability in order to ensure development goals are fully inclusive.

We announced the launch of a pilot project by Sightsavers to try and address this issue, and since then we have been working with our colleagues in Africa and India to identify two projects to focus on in the initial trial stage.

One is a new eye health project in Bhopal District, Madhya Pradesh, India where we will be providing a variety of sight-saving treatments and surgeries to people living in slum areas. This will include establishing vision centres as well as going in to communities and schools to screen for eye problems, and provide spectacles and cataract surgeries for people who need them.

The other is a neglected tropical diseases project in Ruvuma Region in Tanzania where we are tackling both trachoma and onchocerciasis (river blindness).

We chose these projects because the differences between them provide interesting learning opportunities. They cover both rural and urban locations, they address different types of eye health problems, they require the use of both simple paper-based and more sophisticated computer-based data collection techniques, and they will reach people in different settings (hospital, outreach camps and household).

We’ll be visiting India and Tanzania in the coming weeks, meeting with local health and programme managers to talk about the project and understand what they want it to achieve. We’ll also be participating in the training of staff who’ll be collecting this data and listening to any concerns they have about the new processes.

We’ll keep you updated as the projects progress, but even at this early stage we can share some of our learning around the challenges faced when trying to collect this much-needed data about the people receiving services from our projects:

1. Defining disability

This is not an easy task. The very notion of disability is complex and understood differently by individuals, cultures, specialists and academics all over the world. So before we can count people with disabilities, we have to agree what we are counting. The Washington Group on Disability Statistics has gone a long way to providing a standard definition and way to measure disability that can be used globally. However, there is a lot of work to be done training people on using these standards to ensure we collect standardised and reliable data. Pauline and I will be busy in the next few weeks designing and refining a training package that can be adapted for use with people with a broad range of education, skills and understandings of disability.

2. Increasing workloads

Until the pilots are up and running we don’t know how much more time asking the extra questions will add to the workloads of our hugely dedicated and hardworking staff. Will they have time in their busy days to ask the questions and record this data without compromising the other tasks demanding their attention? Do we need to hire extra resources to cope with this workload? We don’t know this yet, but we do know that we have to look for ways to make it as easy as possible for them to collect and use the data. In our pilot projects, we have decided to try different approaches and see for ourselves what works best. In India, for example, we will experiment to see whether we need to employ specific people for collecting data, or whether current staff are able to do this without adding too much time to their workload or compromising on quality.

3. Stigma remains a barrier

We know from our research, and speaking with people accessing our projects, that many people with disabilities feel stigmatised and face discrimination on a daily basis. Because of this we know that some people may be reticent or unwilling to answer questions about disability which makes it harder to find out the true number of people with disabilities coming to our programmes.

To try and tackle this, we are working on culturally sensitive ways to approach our project clients with these questions, including translation, and to reassure them that their data will remain confidential. But stigma and discrimination remain a huge challenge.

4. Interpreting the data

Once we have collected the data we need to have a good plan in place for analysing and using it. Because of the way disability is defined by the Washington Group – it is based on how difficult an individual finds seeing, hearing, walking, cognition, self-care, and communication – and because our programmes help people with vision problems, I expect the data to show a lot of people with disabilities accessing our programmes!

We will need to find a way to understand how many people with disabilities attending our projects have conditions that we can address, and how many may require support from elsewhere.

The quality of the data available at national level is also a concern. Ideally, and increasingly, the Washington Group questions are being used in national census surveys across the world; however, data on disability has until recently been collected using different standards. This could affect our ability to compare the data we collect with that which is available from national sources, such as census records, and limit how well we are able to assess whether our projects are being accessed by people with disabilities.

These challenges may sound daunting, but if collecting this data was an easy task it would be done already! Identifying these challenges is the first step to finding solutions for them and eventually being able to collect the data that we and our partners need to ensure our services reach the people who need them the most.

By Emma Jolley, Technical Advisor on Health and Disability Research at Sightsavers

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