Inclusive data and Sightsavers: an ongoing journey

Tichafara Chisaka, July 2023

In 2018, Sightsavers was proud to co-found the Inclusive Data Charter (IDC), a global initiative to mobilise political commitments and create meaningful action to advance inclusive data.

Inclusive data represents all people, especially those who are marginalised and underrepresented. Momentum had been building on its importance, not just in reporting overall progress against the Sustainable Development Goals (SDGs), but in measuring equity in development in and between countries. This meant relevant organisations working in the development sector, including us, needed to do things differently.

The 10 co-founding IDC partners aimed to collaborate around the principles of equity and encourage governments and organisations to work together to build the momentum needed to invest in inclusive data collection and its use, to ensure more equitable development.

Fast forward five years since the creation of the IDC, we’re now updating our initial Sightsavers IDC action plan, which set out our goals and commitments on inclusive data. This is an important time for us to reflect on what we’ve learnt and how we can best move forward. So, what are our key learnings?

Three women from Cameroon sit around a table during a working group to support people with disabilities on gender-based violence. Behind them is a banner with information about the SDGs.

Sightsavers and the global goals

The UN’s Sustainable Development Goals underpin all our work, and we’re actively supporting other countries to fulfil their commitments.

Our SDG work
A husband and wife from Bangladesh sit on a motorbike, smiling at the camera.
In Bangladesh, husband and wife Jalil and Ayesha carry out mapping surveys to see where people with disabilities live.
© Sightsavers/Farzana Hossen

Align inclusive data to strategic priorities and create platforms to facilitate learning

Clarifying what inclusive data means within our organisational context and building a shared understanding of this is a vital and ongoing process. Through our programme and thematic strategies on health and social inclusion, Sightsavers recognises the importance of inclusive data. It enables us to identify where the barriers that lead to the exclusion of marginalised groups exist. So, we can then address these to improve the effectiveness of our programmes.

Our learning, accountability and measuring progress framework is supported by thematic learning questions, which are used during project design and monitoring activities to ensure that inclusive data is prioritised. Internally, we have established a multi-stakeholder working group to lead organisational conversations around inclusive data and to foster more collaboration, knowledge exchange and learning between different areas. As we update Sightsavers’ IDC action plan in the coming months, we will look at ways to continue improving and enhancing internal collaboration to advance our collective cross-organisational goals.

Promote the collection of inclusive data as well as its analysis and use

There are still significant gaps in the collection of inclusive data. For example, the 2022 SDG report found that “out of 10 SDG indicators requiring data disaggregation by disability, data are only available for two of them”. The recent World Data Forum recognised the need for more coordination and collaboration on data production and use between national level actors from statistics offices, civil society organisations and citizens.

While we must continue to call for more inclusive data collection, it’s equally important that we focus on its analysis and use. If we don’t, we risk having a lot of data that is not being used to effectively drive better decisions and outcomes for the benefit of people who are marginalised or excluded.

At Sightsavers, our work on inclusive data has focused on using the Washington Group questions to assess the prevalence of disability alongside other characteristics such as sex and age. We started this work with pilot projects in India and Tanzania more than eight years ago and have since expanded to more countries through our inclusive eye health and social inclusion programmes. Now, we are shifting our focus to ensuring that data collection leads to better analysis, which will improve how we deliver our work alongside country partners. Our updated IDC action plan will include looking at how we can better consolidate what we’ve learnt about what works and how we can strengthen the collection, analysis and use of inclusive data.

Inclusive data enables us to identify the barriers that lead to the exclusion of marginalised groups

A group of researchers wearing face masks chat to each other outside in a village in Sierra Leone.
A team of trachoma researchers in Kambia district, Sierra Leone.
© Sightsavers/Michael Duff

Consider the enabling systems and processes to advance inclusive data

Advocacy is critical to ensure that inclusive data continues to be a priority for policymakers and decision-makers – but advocacy on its own is not enough. The barriers to national level governments prioritising inclusive data are often complex, ranging from limited technical expertise, insufficient political will and a lack of resources. We need to recognise and respond to these complex and interconnected issues.

In delivering our work on inclusive education, eye health and social inclusion, we’ve seen many of these challenges first-hand. To help strengthen data inclusion within national level systems, advocacy efforts must be underpinned by an understanding of the constraints within a particular context. There must also be a continued dialogue between governments and partners to identify opportunities to improve and support systems to facilitate the effective collection and use of inclusive data.

A call to action

For us at Sightsavers, inclusive data is an ongoing journey. While we have delivered on many of the commitments made in our first IDC action plan, there is still more to do within our organisation and the wider development sector.

In the lead-up to the SDGs Summit this September, Sightsavers is calling for world leaders to accelerate action to ensure that marginalised groups, including people with disabilities, are not left behind. You can join us in calling for more action by signing our petition today.

Our updated Sightsavers IDC action plan will be published later this year alongside a new document outlining our vision and approach to inclusive data. We look forward to continuing to work within our organisation and alongside partners to ensure that the collection and use of quality, timely and reliable inclusive data underpins efforts in the wider development sector to drive better decisions and deliver fairer, equitable outcomes that benefit everyone.

A group of people who attended an inclusive data training workshop in Cameroon.

How can inclusive data advocacy help us achieve the SDGs?

Lessons on inclusive data advocacy based on our experiences in Pakistan, Cameroon and Senegal.

Read the blog


Tichafara Chisaka is Sightsavers’ programme manager for inclusive data.


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