Everybody counts: How Sightsavers are exploring disability data

Posted on 18/07/18 by Sightsavers

Over the past year WASHwatch has been examining data gaps across the WASH sector, asking if progress isn’t measured, how do we know if progress is happening at all? This phenomenon is not unique to the WASH sector, and gaps appear across the Sustainable Development Goal agenda. Sightsavers have been working to highlight the lack of disability disaggregated data available. Ahead of the Global Disability Summit, we wanted to share Sightsavers recent reflections on the importance of collecting disability disaggregated data.

Everybody counts

Globally, there is a lack of accurate data on disability. We aim to change this by looking at ways to collect, use and share data about the inclusion of people with disabilities. We want to understand whether people with disabilities are accessing eye health services, build an evidence base on how to disaggregate routine data by disability, and ultimately ensure all health services are accessible. We have been doing this by disaggregating data by disability in a number of our health programmes in India, Malawi, Tanzania, Ghana, Mozambique, Pakistan and Bangladesh.

We have been testing the UN recommended Washington Group Short Set of Questions (WGSS) – which focus on functional limitations.

What we found: India

In India we integrated the WGSS and the Indian national census question on disability (are you disabled?) into an Urban Eye Health programme, and at vision centres, outreach camps and an NGO eye hospital, collecting pilot data on 24,518 patients over a 16-month period. This simple comparison demonstrated a dramatic difference in results, as highlighted below

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When asked the national census question – ‘are you disabled?’ 0.6% of people identified as people with disabilities.

However, when asking the WGSS 16.7 per cent of respondents identified as people with disabilities. Even excluding the sight domain – which we would expect to be high in our programmes – the prevalence was nearly 9 per cent.

This example shows the importance of using the WGSS to gain a proper snapshot of the number of people with disabilities accessing our programmes.

Recommendations

By giving us accurate data, the WGSS have provided a critical first step to improving the accessibility of our programmes. Our experience demonstrates that they are an appropriate tool for collecting disability disaggregated data in health programmes. However, it is critical to acknowledge that simply collecting data will not change anything: there must be a plan for analysing and acting on the data. We would encourage other actors to disaggregate their data by disability, and recommend:

• developing clear objectives for why data is being disaggregated.

• planning how data collected will be analysed and used to inform decision-making.

• including contextual sensitisation and training on disability, and on the Washington Group questions, along with translating questionnaires and introductions, and testing them during training sessions. These are essential requirements to ensure data is valid.

• limiting references to disability in data collection – instead referring to difficulty in functioning – to reinforce the link between accessibility and functional limitations, and to protect against negative attitudes and discrimination which can influence the way questions are asked and responded to.

• collecting the experience of data collectors through workshops and reviewing the approach every six months based on evidence.

Our experience has shown us that disaggregating data by disability is not only possible, it also has the potential to be transformational. The process of collecting data on disability helps raise awareness and gets people talking about their health needs, ensures health workers prioritise the rights of people with disabilities, and helps sensitise policymakers and the wider community on the importance of accessible health services and disability-inclusive practice. For the 2030 Agenda to have the impact that is required, transformational change is essential. We hope that by sharing our experience we can contribute to the evidence base, help drive the collection of better, more accurate data, and ultimately ensure that everybody counts.

 

Sightsavers is an international charity working to prevent avoidable blindness, support equality for people with disabilities and advocate for change. They tweet as @Sightsavers