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Informing discussions on data and disability

Pauline Thivillier, October 2014
A female teacher is standing at the front of a classroom teaching, many school children are looking at her.

“Data on disability would allow project managers and policymakers to get a better understanding of who is accessing their services”

How can lessons from our programmes help inform current discussions around data and disability?

Data is a hot topic in the development world at the moment, with discussions around its potential to help programmes reach those who are most in need.

Earlier this year the International Development Committee Inquiry into Disability and Development called on the UK Department for International Development (DFID) to report disability disaggregated data from its programmes and to disaggregate targets in its results framework. DFID responded by committing to publish a disability framework, central to which will be the ability to report data disaggregated by disability.

Today, DFID is co-chairing a conference with the Chief of the UN Secretariat for the Convention on the Rights of People with Disabilities and Leonard Cheshire Disability. The purpose is to encourage a shared understanding among bilateral and multilateral donors, civil society organisations and academics, about where we currently stand and what needs to be done to collectively move forward. The conference will also focus on the use of the Washington Group questions to discuss what integrating a disability component into broader statistical data collection efforts would look like.

And tomorrow, a public seminar on the Globalization of Disability Measurement at University College London will offer civil society the opportunity to reflect on developing questions for monitoring the UN Convention on the Rights of Persons with Disability and post 2015 Sustainable Development Goals.

Within this context, evidence from Sightsavers’ disability disaggregation pilot project has the potential to make a significant contribution, as DFID and other bilateral and multilateral donors are seeking evidence on what works.

How can data disaggregated by disability be collected on a project level in a resource-efficient way that is useful to policy and decision makers?

An important element of the project was to capture the views and expectations of programme managers and staff working within the systems, both at the start of the project and over its duration.

With this in mind a number of questions were identified to establish people’s understanding on a number of issues.

What did they tell us on their understanding on issues around accessibility of people with disabilities to projects and how they saw data as playing a role?

Without data, project managers and policymakers were unable to say whether their programmes were accessed by people with disabilities. They identified likely barriers to access at community, health facilities and government levels. Data on disability would allow them to get a better understanding of who is accessing their services, who isn’t, and why. They would then be able to tailor them accordingly and improve provision. There were also more discrete benefits from having data focusing on certain disabilities, including being able to develop groups of blind people for economic support activities.

What did they tell us on the definition of disability provided by the Washington Group in relation to their own understanding of disability?

There was a general agreement that the definition articulates the issue that may actually be preventing people from accessing health services. Concerns were raised regarding possible over and under reporting of limitations experienced by people such as:

  • Conflation of health-related permanent disability with participation restrictions associated with aging.
  • Temporary restrictions associated with illness or pregnancy, which could inflate the number of people recorded as being functionally disabled.
  • The lack of focused questions relevant to mental health problems, which could result in many people with permanent disabilities being excluded from the numbers recorded.

As such, sensitisation and advocacy activities with the community and government on the Washington Group definition and questions were qualified as key to ensure better understanding of disability; especially in countries where the medical definition of disability is used.

What did they tell us about the adaptation of tools and processes currently used to collect data to include disability data?

Changing health management information systems is hard, especially when it comes to paper based tools due to format and cost implications. Project managers and policymakers also agreed that the questions fit best in the demographic section of the data collection and should be included from the start of the project. Electronic collection tools and Mhealth (mobile health) technology seems to be favoured by project staff as they allow more flexibility.

Translation of the questionnaire is essential to ensure good understanding but this is not necessarily enough in countries where there are over a hundred local languages. The addition of standardised examples was recommended by project managers and policymakers.

What did they tell us about their staff buy-in capacity?

Concerns around the additional workload caused by the six extra questions in the data collection tools were expressed by all policymakers, decisionmakers and data collectors. These concerns were somewhat abated following the pilot testing where staff observed it took only a few minutes to ask each patient the questions. It was also observed that with practice, asking the questions and recording the responses becomes easier.

What are the next steps?

This is a learning project and therefore having a strong monitoring and evaluation plan is critical to provide us with qualitative information on the disaggregation process. The initial stages of the project are crucial and interviews with policy and decision makers as well as focus group discussions with data collectors provided us with important information that will inform future projects.

In order to gather more learning and inform further discussions, we are now looking at scaling up our pilot project on a larger scale and in other countries.

This will also give us the opportunity to look at other ways to collect data such as sentinel surveillance using spot check data collection, Mhealth and the use of mobile phones and the development of a new model disability survey. We will continue to document, evaluate and share the learning for our pilots.

In 2015 we are also exploring opportunities to incorporate social inclusion work into our two eye health projects to test approaches to inclusive eye health programming.

There will be a mid-term review of the data disaggregation pilot in the new year which will give us another opportunity to assess how the project is performing and feed back.

View Slideshare presentation data disaggregation project by Emma Jolley, Sightsavers Research Associate:

Sightsavers disability data disaggregation pilot from Sightsavers

By Pauline Thivillier, programme delivery monitoring officer at Sightsavers 

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