Our Experience of Using Disability Disaggregated Data

Sightsavers International Share Learning

In September 2015, world leaders adopted the Global Goals which frame development for the next fifteen years. The Global Goals focus on equity and universality in order to ensure that the furthest behind are reached and that no one is left behind. In order to track progress at the national, regional and global level, a large amount of high quality, timely and disaggregated data is needed. Low Income Countries must be supported to build their statistical capacity in order to increase the availability of good data. While it may be complex and costly, it will not be possible to realise and evidence delivery of the Global Goals without significant improvements in the gathering, analysis and use of disaggregated data. This article is part of a series exploring the benefits which quality data disaggregation can bring to decision making in development policies and programmes. With special thanks to our good friends at Sightsavers for sharing their learning and this article.

Sightsavers has been testing the Washington Group Short Set of Questions in an Urban Eye Health programme in India, a rural Neglected Tropical Diseases programme in Tanzania and with the Rapid Assessment of Avoidable Blindness tool (Rapid Assessment of Avoidable Blindness tool). We’re sharing our experience so far, based on four questions:

How did the data shape decisions?

In India, our disability disaggregated data pilot has developed into an Inclusive Eye Health project. Collecting data on disability was always just the first step to inclusion. Partners want to continue to improve the way data is collected and programmes are delivered. Our work will explore better technology solutions and data analysis to improve interventions, and include training, referral mechanisms and awareness raising activities.

In Tanzania, we adapted our approach to better meet the health needs of the community. Our data showed a high prevalence of people with disabilities attending Neglected Tropical Diseases camps (19.3%; 9.5% excluding the sight domain). Qualitative information collected alongside the Washington Group Short Set of Questions confirmed that people with disabilities were attending the camps and also seeking general health services. This led to programme staff identifying needs in each village, and targeting interventions accordingly. Our programme provided medicines, minor treatments and surgeries, and established referral mechanisms to nearby facilities.

Our data has also driven discussions on how we can best contribute. Given our findings and experience, we think it’s appropriate to incorporate the Washington Group Short Set of Questions in population-based surveys to assess prevalence of eye health conditions in localised areas. We have incorporated the Washington Group Short Set of Questions into Rapid Assessment of Avoidable Blindness tools and are exploring how they can be used in a complementary way with other tools, including equity assessments. This will allow us to collect and analyse disability, gender, age and equity data to make evidence-based decisions to improve access by marginalised population groups.

Was there anything surprising which data has told you that you might not already have known?

The difference between prevalence rates in national censuses and using the Washington Group Short Set of Questions is marked. India’s 2011 census reported 2.21% of the population as people with disabilities. We asked the census question alongside the Washington Group Short Set of Questions to 24,518 patients which revealed a prevalence rate of 16.7% (using the Washington Group Short Set of Questions recommended cut off). Asking the census question ‘are you disabled?’ to the same group revealed just 0.6%.

In Tanzania the Washington Group Short Set of Questions has been used in the most recent census, but the introduction referred to ‘disability’ before the questionnaire, which is not recommended and resulted in low prevalence rates, ours — at 19.3% — was again far higher. This emphasises the importance of sensitisation before collecting data on disability. High levels of stigma mean referring directly to disability may alter the way people respond. How and where data is collected is critical, and demonstrates why it is useful to regularly review your approach, based on feedback from implementers.

Did gathering the data help with programme targeting?

As the Washington Group Short Set of Questions were not designed to reveal more than prevalence, we think it’s important to look at how they can be used in conjunction with other tools. Our data is helpful at demonstrating where this further analysis is required. In India, a total of 14,891 patients visited the hospital, and 9,627 visited the vision centres and outreach camps. Conversely, 80% of people with disabilities were identified at the centres and camps. This suggests there are barriers for people with disabilities accessing the tertiary level. The next step is to ask why and to analyse those barriers. In Cameroon, data shows that almost half (49%) of people with visual impairments had ‘a lot’ or more difficulties in other domains. This further emphasises the need to ensure health services are inclusive of all.

What, if any, difference did the data make to the impact on the most at risk of marginalisation?

It’s too early to assess the impact our changes have had, but we can report the process of collecting data on disability has a transformational impact on negative attitudes. Qualitative information has revealed that discussing disability has led to greater understanding amongst health workers and data collectors. It also helps decision-makers understand the importance of inclusion — senior managers at our partner organisations committed to inclusive approaches having realised more needed to be done to reach their own missions of universal access.

Our disability disaggregated data work is an organisational priority as it is informing better programme design, helping to address discrimination, and contributing to our vision of a world where everybody counts.

Useful resources

Contact

Fred Smith: fsmith@sightsavers.org

Find out more about the work we are doing at the Department for International Development to improve the production, analysis and use of better quality disaggregated data. Download our action plan today.

More articles in this series

  1. A world where everyone counts: Publishing the DFID Data Disaggregation Action Plan
  2. Our Experience of Using Disability Disaggregated Data: Sightsavers International Share Learning
  3. Our Experience of Using Age and Sex Disaggregated Data: HelpAge International Share Learning
  4. World Data Forum 2017: Three Simple Ways to Join In
  5. A Conversation on Data Disaggregation: An Inclusive Revolution
  6. Help Us Improve Age Disaggregated Data
  7. Help Us Improve Age Disaggrgated Data: Aging
  8. Help Us Improve Age Disaggrgated Data: Youth
  9. Help Us Improve Disaggregated Data: Technical Discussion paper
  10. A Human Rights Based Approach to Data