Patients at one of the participating hospitals for Sightsavers disability data collection in India. Photo by: Peter Caton / Sightsavers

Last week governments and experts met in New York to work out how world leaders and donors will be held to account on the new sustainable development goals once they are agreed later this year. Effective monitoring of development targets and indicators will rely on more and better information about the current realities for people affected by poverty.

Sightsavers believes that — in line with the “data revolution” — the SDGs should include collecting data disaggregated by disability in the new development framework. Because people with disabilities were excluded from the Millennium Development Goals, they have been largely left out of poverty reduction progress. The post-2015 framework currently promises to target people with disabilities, but without better, more accurate data we can’t determine the impact on this group of people, and there’s a risk that, yet again, they will miss out on development initiatives.

At Sightsavers, we have been testing how to collect better data on disability for six months now and halfway through our disability disaggregation pilot project, we have gathered data from more than 10,000 people who have used hospitals, vision centers or outreach camps in India and Tanzania. We are asking patients a series of questions about functional difficulties, as defined by the Washington Group Questionnaire, with the aim of identifying people with disabilities.

In talking to program managers, partners, data collectors and patients, four top tips for data disaggregation have so far emerged:

1. There is no single approach to data disaggregation. A different approach will be required in different environments. For example, staff has a lot more time to sit with patients and ask them questions in a small vision center than it does in a busy public hospital. We have already learned a lot about the challenges, such as delays in registration and lack of confidentiality, so we’re exploring other approaches for the hospital setting to see what works better. We advise that any approach should be reviewed after six months so the necessary adjustments can be made.

2. Data disaggregation does not have to be an extra burden. People often view the collection of additional data as an extra burden and cost, but the integration of data disaggregation from the start of a project ensures that the resources and budget are already in place. When projects already exist, save time and energy by integrating data collection into existing practices. We found that training of data collectors gave staff confidence using the questionnaire, and with practice they got quicker at asking questions.

3. People need to understand why data is important. We have realized it is key for people to know why we collect data on disability. Buy-in and ownership by partners and data collectors ensure the collection of good quality data, but these are not enough. We found that patients are much more inclined to respond to a questionnaire when they know why they are being asked the questions. Due to this, we’ve now added a short introduction to the questionnaire.

4. Just collecting data will not create change. Once you are confident about your tools and processes, you need to use the data. Our partners feel that they have a responsibility to use the data collected because, by asking questions, they raise people’s expectations. For example, when looking at the data, vision centers 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. They are applying learnings to existing activities, such as teacher training, recommending teachers to refer students to the centers.

Vision centers have also researched other services in the area so they can provide patients with disabilities with information about where they can get medical or professional support. Now our partners are looking forward to collecting more data in the next six months so they can do more analysis and include the results in the planning of key activities and future projects, ensuring accessibility and greater inclusion of people with disabilities.

Only six months in and we already have a lot of knowledge to help refine our approach in India and Tanzania. The next six months will no doubt highlight new learnings both for Sightsavers projects worldwide and the development community. Collecting better disability data is not just important for improving our approach, it will be critical to ensuring the SDGs have a genuinely lasting impact for some of the poorest people across the world. We encourage you all to start finding new ways to gather, collect and use data in your programs; it’s a great learning experience for everyone involved.

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About the author

  • Pauline Thivillier

    Pauline Thivillier is a program delivery monitoring officer at Sightsavers. She has previously worked for UNHCR, Mines Advisory Group and Fair Trials International. She holds two master’s degrees, one on European litigation in Université Panthéon Assas (Paris II) and another on international and European law from the University of Manchester. She is currently based in the United Kingdom.