Everybody Counts

Piloting Disability Disaggregation in

Routine Data Collection

- A pilot in eye health

Sightsavers

• NGO founded in 1950

• Vision: a world where no one is blind from avoidable causes and where visually impaired people participate equally in society

• Eye health, neglected tropical disease, education and social inclusion programmes

© Sightsavers

Why disaggregate data?

• Access is a complex issue.

• Need to understand provider and user side barriers…and the bits in-between

• Our theory to test: Not all of our eye health and NTD programmes are currently accessible to people with disabilities.

• First step: measure current access to see if people with disabilities use our services, and at what rate, relative to the people who do not have disabilities

How are Sightsavers’ eye health and NTD programmes serving people with disabilities?

05/02/2023

Disability Disaggregation pilot projectThe objectives of this project are to:

• Understand whether people with disabilities are accessing our services

• Build the evidence base to inform our own work, share with others and demonstrate the clear case for collecting data on disability

• Ultimately make Sightsavers’ eye health and NTD projects more inclusive of people with disabilities.

The two pilots are:• Eye Health Project in Bhopal, India • Neglected Tropical Disease (NTD) Project in Tanzania

© Sightsavers

Pilot projects• New eye health programme

• Urban slums (Hospital and Vision Centre)

• Translate WG in to Hindi

• Partners: local community development organisation and an eye hospital

• India Census 2011: 2.1% prevalence of disability in MP (Q: ‘is X disabled?’)

• Legal definition (medical certification) of disability can confer benefits

05/02/2023

© Sightsavers

Pilot projects

• Neglected tropical disease project (trachoma surgeries)

• Rural area

• Questionnaire already translated (except communication Q)

• Partners: MoH (NTD dept) and Tanzania League of the Blind

• National definition of disability similar to CRPD and WG

Tanzania: Songea

05/02/2023

Data Collection

• Washington Group short set of questions integrated in to routine data collection

• Integrated as a demographic variable in existing data collection tools (electronic and paper tools)

• As this is a pilot we monitored:• Experiences of people involved in the project• Quality of the data collected

• Evaluation questions: 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.

 

What we have learnt

Know the context:

• Disability is a concept highly dependent on contextual and cultural factors, so sensitisation on disability and the Washington Group questions in the relevant local language is essential.

• Negative attitudes and stigma can prevent people from answering questions or lead to prejudice in those asking the questions.

• Asking questions can raise expectations – explain the questionnaire and think about referral mechanisms.

What we have learnt

Plan & be flexible:

Data systems can be resistant to change • Translation of the questionnaire into local languages can be

difficult.

• Paper based data collection tools are difficult to adapt

• Integrate data into existing practices to improve efficiency and reduce workload.

• Where the data is collected must be considered.

• Review your approach frequently based on feedback from project’s implementers.

What we have learnt

Ensure buy-in / ownership: Data collectors (& others stakeholders) need to understand why data on disability is important:

• Sensitisation should not be limited to people directly involved with the project.

• Adapting all training sessions to the local context and in line with national definitions of disability.

• Analysing the data is necessary to initiate change.

Lessons and challenges from Tanzania and IndiaOn the WG questionnaire:

• Questions 1 and 2 proved problematic in Hindi and were over complicated.

• Questions 5 and 6 (domains: self-care and communicating) cause issues:

Clients with no difficulties bored by this point Some report finding the questions offensive Staff feel clients answer ‘No difficulty’ repetitively just

to finish quickly

We conducted a sensitivity analysis to understand how excluding these questions would change our results…

Lessons and challenges from Tanzania and India

Total

Male

Female

<50 y

ears

50 + ye

ars

Tertiar

y cen

tre

Primary

centr

e0%

10%

20%

30%

40%

6 domains4 domains

How does prevalence change when we remove the two domains?

Lessons and challenges from Tanzania and India

• Several iterations of testing has improved the speed and ease of asking

• Collecting data on disability using the WG short sets takes on average 5 minutes.

• It can take longer depending on: Age of the patient Education level Language Disability

Lessons and challenges from Tanzania and India

The process of engaging in the data collection has in itself a transformative effect.

• Data collectors give special attention to people with disabilities

• Community sensitisation now includes disability / link work with other projects

• India: Introduction of referral mechanism to other health structures – case for Inclusive Eye Health

• Tanzania: Referral and provision of additional treatments in camps – case for Coordinated Approach to Eye Health

Initial data from Bhopal, IndiaData collected on over 16,000 patients in India during the first 10 months shows that:Prevalence of disability varies greatly depending on the definition and cut-off used.

Series1

0% 10% 20%

0.7%

7.0%

15.0%15% of project clients report severe or completely limiting difficulties in at least one domain.

7% when we exclude the sight domain.

0.7% when we ask them directly if they are disabled (as in the national census).

Initial data from Bhopal, India

It is also interesting to look at the data with other variables:

1. Location: reporting disability is linked to the location of services.

2. Sex: Prevalence of disability varies by sex depending on the definition of disability used or the location.

3. Age: Disability generally increases with age

Lessons for replication?• Disaggregation requires commitment to include people with

disabilities in services

• It is only the beginning of a fundamental shift to inclusive services

• The data collection process itself can awaken the need for inclusive services and stimulate the demand to provide them.

• Before investing in data systems, it is imperative to ensure that the data can and will be used by people with power to implement change.

What next?India:

• Created awareness and demand which did not exist• Partner organisations changed community communication

practise and referrals• Confirmed plans for Sightsavers to pilot inclusive approaches to

eye health to improve accessibility to services we support in 2016.

Tanzania: Project just ended and we are thinking about next steps.

Ghana: new pilot, data collection taking place in 2016• Mass Drug Administration in general population for neglected

tropical diseases. • Community data collectors

What next?Global

• Sharing learning in reports, articles…

• Presentation in various forums WG annual meeting, UN M&E network on disability including development

• Publication of a policy brief

• All resources available on our website: www.sightsavers.org/everybodycounts

• Review of our strategy for 2016 – Phase 2 of the pilot.