How we’re advancing inclusive data

As an Inclusive Data Charter (IDC) champion, Sightsavers is committed to advancing the collection, analysis and use of inclusive data to promote equitable outcomes for people with disabilities.

Sightsavers’ updated IDC action plan for 2024-27 outlines how we’ll advance our work on inclusive data through improving internal knowledge and practice, collaboration with partners, strengthening accountability and reporting, as well as influencing governments and others to improve their policies, systems and processes on inclusive data.

We recently launched the Sightsavers Inclusive Data Network (SIDN), a platform where we aim to share our knowledge and learnings on inclusive data. At our first webinar in June, Sightsavers and partners highlighted three main lessons we’ve learned so far.

Data fuels the advocacy arguments we make for better international agreements, national laws and policies. With inclusive data, we can show the real inequality gaps experienced by people with disabilities, and we can show that those gaps can be closed effectively, with evidence.

Dom Haslam, deputy CEO and director of policy and programme strategy

1. Inclusive data informs improved analysis and insights

Inclusive data enables us to better understand the people who are being left behind and helps us draw insights to drive more evidence-based interventions.

In Malawi and Uganda, we’re working on collecting inclusive eye health data. The aim is to help build an equitable and sustainable eye care service by providing accessible and inclusive services for everyone, including marginalised communities. The project looked at what proportion of patients accessing eye health services are people with disabilities and disaggregated the data by sex, age and location.

Data from both countries showed a higher proportion of disabilities were reported at outreach camps (47%) compared to secondary hospital facilities (32%). However, this does not necessarily translate to a higher uptake of services in camps. Further data analysis is planned in Malawi to better understand why there is less uptake among certain groups. In Uganda, the inclusive data project findings have been shared with organisations of people with disabilities (OPDs), civil society, the ministry of health and other key stakeholders.

2. Partnership and collaboration are key enablers for driving change

SIDN is a significant step in advancing inclusive data by enabling continuous collaboration and learning with our partners. During the network’s launch webinar, CBM Global (CBMG), one of Sightsavers’ key partners on inclusive data, shared research from Nigeria and Bolivia, where deaf researchers highlighted challenges in health access for deaf women. A lack of sign language interpretation and community support demonstrated the need for better data representation to serve all communities.

Collaboration with OPDs is essential for advancing the inclusive data agenda. Effective partnerships require meaningful participation, adequate training, and financial and technical support. Feedback from OPDs was crucial in collaborative efforts on CBMG’s disability data advocacy toolkit, which highlighted a strong need for training in data analysis and use to support data advocacy. In Sightsavers’ work on inclusive data, we’ve found the engagement and participation of OPDs is an important catalyst for change.

3. Influencing decision-makers to make processes and systems more inclusive is critical

An objective in Sightsavers’ IDC action plan is advocating for governments and development actors to strengthen their policies, systems and processes to effectively collect, analyse and use inclusive data. Advocating for inclusive data is key to standardising and improving data collection, analysis and use by development agencies and governments.

In Zambia, Sightsavers engaged OPDs in advocacy to integrate disability inclusion in the election process, which resulted in the Zambia Electoral Commission conducting a mapping exercise to identify people with disabilities and improve accessibility during the elections. Although it was difficult to quantify the participation of people with disabilities, a new voter registration system aims to capture disability data with the goal of increasing data collection by the 2026 elections.