Lifting the rock on inclusive data: Sightsavers and the Inclusive Data Charter

Sightsavers, November 2023

The inclusion of people with disabilities is at the heart of Sightsavers’ mission. But without robust inclusive data, it is impossible to adequately plan and allocate the necessary resources to ensure our programmes achieve their objectives.

Inclusive data allows us to understand the people and communities we work with and to monitor who we reach, while ensuring we address and mitigate inequalities.

We spoke to Dominic Haslam, Sightsavers’ director of policy and programme strategy, about the launch of our second Inclusive Data Charter Action Plan and how it reaffirms our commitment to advancing the collection, analysis and use of inclusive data alongside others in the development sector.

What is inclusive data?

At Sightsavers, inclusive data means collecting, analysing and using data that is broken down (or ‘disaggregated’) by disability, sex and age, while also bringing in dimensions such as geography, wealth and poverty, where relevant and valuable.

In a village in Mozambique, two people in blue polo shirts hold clipboards and talk to members of the local community.
When collecting data, Sightsavers aims to understand how different characteristics interconnect in situations of marginalisation and exclusion. © Sightsavers/Alyssa Marriner

Hi Dom! To begin, can you provide some background on Sightsavers’ work on inclusive data?

Our involvement goes back to 2015 and the wider shift in the development sector from the Millennium Development Goals to the Sustainable Development Goals (SDGs). While they cover many of the same areas, the SDGs went further and have a focus on leaving no one behind. Groups and individuals did not benefit equally from progress made under the Millennium Development Goals. For us, this change is specifically evident in the inclusion of people with disabilities in several of the goals, as well as a broader focus on sex, age and other marginalised groups.

Other characteristics of marginalisation require new ways of measuring progress and focusing on fresh ways of collecting different types of data. So, the launch of the Global Partnership for Sustainable Development Data (GPSDD) in 2015 gave us a space to learn, share and work with other organisations looking at similar issues. Through this, the Inclusive Data Charter was developed.

What’s the main focus of Sightsavers’ newest Inclusive Data Charter Action Plan?

We launched our second Inclusive Data Charter Action Plan this month and it reaffirms our commitment to collecting and using inclusive data. It looks at what this commitment means for our work, what we’ve learned since our first action plan and our key commitments over the next three years, up until 2027.

But this isn’t a new focus for us. Inclusive data is an area that we’ve been working on for the last few years but we’re making a real shift to look at intersectionality. Put simply, people are more complicated than just one characteristic, like disability, age, sex or economic status. So, for us, we want to understand how these different characteristics interconnect in situations of marginalisation and exclusion. This is critical to addressing the barriers so in this new action plan, there’s an increased emphasis on looking at these intersecting factors.

Secondly, our new plan has a bigger focus on strengthening the capacity of our civil society partners to collect, analyse and use this data themselves in their advocacy and influencing work with governments and other organisations. We want this work and data to be in the right hands. It will be more effective and more useful if it’s in the hands of those who are affected by the issues we’re talking about.

Thirdly, our action plan reaffirms our support for the Inclusive Data Charter network and collaboration with other champions. We want to continue to grow the number and range of IDC champions and I think we’ve made real progress in the last few years sharing the value of the charter. But there’s a lot more than can be done, there are a lot more governments out there and we need to mobilise efforts on inclusive data.

Read Sightsavers’ Inclusive Data Charter Action Plan

How has Sightsavers’ work on inclusive data evolved?

We’ve increased our own understanding of the intersecting nature of marginalisation and inequality, helping us to better understand the barriers that people face. The data we’re collecting across our thematic areas of health and inclusion has grown significantly. Our understanding of the technology and approaches we can use has also grown and we’re way ahead of where we were three or four years ago.

I’d like to mention our relationships with governments and national statistics offices, which is a huge area of progress. Sightsavers has built strong relationships on inclusive data with countries such as Senegal, Nigeria and Pakistan, and together there’s a shared approach to problems and solutions, which goes beyond our own engagement and areas of focus.

You’ve mentioned the ‘lifting-the-rock’ moment in the past in relation to working with governments. Can you tell us more about that?

It’s an analogy that I’ve used quite a few times over the years: the lifting-the-rock moment. We work with governments but in the end, governments are made up of individuals. They have a positive sense of mission and purpose. They want to be doing things in the Ministry of Health, the Ministry of Education, the Ministry of Social Welfare and so on. They want to make lives better for the citizens of their countries. But they know that there are people not being reached or who are not able to access services. They know which population groups these are but don’t have the data and the evidence to show it. And they are already stretched for resources: financial, staffing, technical and so on.

So, nobody really wants to lift that rock, because once you lift the rock, you have the data and the evidence. You know what the scale of the problem is and it’s your job to fix it. But you’ve already got enough problems on your plate without the resources to solve them. So, you don’t really want to lift that rock. And I think the Inclusive Data Charter has enabled those kinds of lifting-the-rock moments in a really positive sense.

Together, working alongside each other, we know that there are going to be challenges in collecting, using and analysing data. But nobody’s judging anybody. What we’re saying is that having the data is a starting point. If you don’t have the data, then you don’t know the scale of the problem.

And I think these lifting-the-rock moments have been increasingly positive over the last few years. And other governments want to sign up to the Inclusive Data Charter and I think that’s a really, really positive sign.

“Once you lift the rock, you have the data. You know the scale of the problem. The Inclusive Data Charter has enabled those lifting-the-rock moments.”

Data gatherer Abakar in Liberia sits at a desk with a computer and several mobile phones.
Sightsavers' understanding of the technology used in data gathering has grown in recent years. © Sightsavers/John Healey

What are the key opportunities for Sightsavers and other organisations working on inclusive data?

The Inclusive Data Charter is a collaboration of many partners and was formed from within the existing partnership of the GPSDD. It’s not just non-governmental organisations with an interest in disability, sex, age or migration. It’s all of those areas and themes coming together with data specialists, private sector organisations, government ministries, donors, governments and statistics offices.

This gives the charter the potential to achieve lasting change. And inclusive data is a new issue that we’re we’re tackling a new issue so, we’re at the cutting edge. We’re sharing learnings openly, including what we’ve learnt and what doesn’t work so that others don’t waste effort by repeating the same mistakes. It’s really important to maintain focus and momentum and to keep pushing the things that are working.

For me, it’s the new partnerships and approaches that are an opportunity to better judge where progress is being made, or where it isn’t. We can use our own experience to support others and talk about where progress isn’t being made. Inclusive data enables us to understand those barriers and do everything we can to address them while also recognising that there’s so much that we and others can do.

What’s your call to action for someone reading this?

We still don’t have enough inclusive data. There still aren’t enough people talking about it or focusing on it. The reality is that we just can’t click on a portal and find information against every indicator included in the SDGs disaggregated by specific population groups. It isn’t happening at the same speed as other progress, but it could be if the focus and resources were put in.

I would say that if you are an organisation that has an interest in sustainable development, you need to be thinking about inclusive data. Otherwise, how can you know whether things are moving forward? So, I would point you towards finding out more about the Inclusive Data Charter and seeing whether it’s something that you think you can add value to and get value from because we’re always open to working with new partners.

If you’re an individual, then I think the first thing to do is check out what’s happening around citizen-generated data. There are a lot of opportunities to provide individual experiences which have the potential to impact policy change in a way that hasn’t been the case before. Civicus has done some interesting work on this for example, so you could start by checking out their website.

“If you’re an organisation that has an interest in sustainable development, you need to be thinking about inclusive data.”


Dominic Haslam OBE is Sightsavers’ director of policy and programme strategy. Read more about Dom


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