This week was the first ever United Nations World Data Forum in Cape Town, South Africa.
During three full days, data and statistics experts from around the world met with civil society organisations, governments and academia to explore how to successfully measure progress towards the Sustainable Development Goals (SDGs) and data for human development in general.
I was attending both as a Sightsavers employee and a board member of the International Disability and Development Consortium (IDDC).
At Sightsavers, the disaggregation of data by disability is our number one priority for inclusion and I was at the forum largely to share our learning and make connections with others working in this field. We have been testing the Washington Group on Disability Statistics’ Short Set of Questions: in an urban eye health programme in India; in rural neglected tropical diseases programmes in Tanzania and Malaw; and with the Rapid Assessment of Avoidable Blindness tool in Cameroon. The learning has been phenomenal. Here are some of the key points I would like to share:
Using the Washington Group Short Set of Questions (WGSS) is a critical first step
The WGSS tool gives the prevalence of a range of, and levels of, impairments, as self-reported by individuals. They’re designed to be used at the national level, and we have specifically been testing them in district or service levels. We want to see how they can help assess and improve the inclusion of health programmes not only for Sightsavers, but also for the health system as a whole, through transparent sharing of our learning.
The key has been in analysing and understanding what the results tell us, and what the next steps should be, often finding out more information. For instance, in India, a total of 14,891 patients visited the secondary hospital included in the survey, and 9,627 visited the primary level vision centres and outreach camps. However, 80% of the people with disabilities accessing the project’s services as a whole were identified at the centres and camps. This suggests that either people with disabilities have less complex eye conditions and that these can be treated at the primary level, or more likely, that there are barriers for people with disabilities accessing the secondary level eye services. Our next steps have then been to ask why and to analyse those barriers. And in Cameroon, data shows that almost half (49%) of people with visual impairments had ‘a lot’ of difficulty or more difficulty in at least one other domain included within the WGSS. This further emphasises the need to follow up and use the data to create health services inclusive of all.
Collecting data is itself a driver of change
The process of collecting data on disability triggered drastic change in our projects in India and Tanzania. People in the community described the questions on disability as an ‘open door’ which allowed them to talk about their lives. Service providers reported feeling ‘closer to the community’ and also felt that they had a responsibility to provide people who report difficulties with information on services available. They also started making changes to their services by providing additional basic health services, realising that people with disabilities were attending NTD surgery camps with other conditions (for example, in Tanzania, in order to access health care more easily). The project also stimulated the referral network, with the partner hospital in Bhopal, for example, making sure it kept information on other health services in the local area, so that if people asked about treatment for other impairments than sight, they could direct the patients to available services.
Collecting data on disability had a transformational impact on negative attitudes
While it is still too early to assess the impact, we can already report that the process of obtaining data focusing on disability has led to greater understanding among health workers and data collectors. It also helped decision-makers recognise the importance of inclusion. Senior managers at our partner organisations committed to inclusive approaches because they realised they needed to be actively involved in order to support universal access and deliver on their stated missions of delivering health to all.
Overall, the process of collecting data on disability created a new demand for more and more inclusive projects! I hope to see a similar process take place within the UK Department for International Development (DFID) following the launch of the Data Disaggregation Action Plan at the World Data Forum this week. This was an exciting moment for everyone working in this field, especially since DFID wants, by 2030, to be recognised as a global leader on data for development, with the commitment to disaggregate data by sex, age, geography and disability status. This is a fantastic commitment and Sightsavers and other IDDC members will be there to support DFID in its efforts!
For more information about Sightsavers’ work, please check out Everybody Counts.
United Nations World Data Forum
More information on IDDC and the SDGs
By Dominic Haslam, Director of Policy and Programme Strategy, and Marion Steff, former Sightsavers Policy Advisor on Inclusion