Initiatives for SDG Data: Disaggregation of Data by Disability in Eye Health Projects

Pauline Thivillier, Monitoring Officer

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

• Empowerment and inclusion strategic framework (2015)

Disability Disaggregation pilot project

The objectives of this project are to:

• Expand how we disaggregate data in order to include people with disabilities

• Share our experience of disaggregation with others

• Advocate for the need to collect data specifically around people with disabilities

Two projects, selected for their geographical and thematic variety and opportunities to use new technology.

© Sightsavers

Pilot projects• New eye health programme

• Urban slums (Hospital and Vision Centre)

• 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)

• Translate WG in to Hindi

• Electronic tool (HMIS)

© Sightsavers

Pilot projects

• Neglected tropical disease project

• Rural area

• Partner: Ministry of Health

• National definition of disability similar to CRPD and WG

• WG Questionnaire already translated (except communication question)

• Paper tools

Tanzania: Songea

Methods

• WG Short Set of Questions integrated in to routine data collection tools

• Data is analysed in excel and Stata (Data Analysis & Statistical) software

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

• Regular in-depth interviews and focus groups, data quality audits and patient exit interviews

Washington GroupIntroductory phrase: The next questions ask about difficulties you may have doing certain activities because of a HEALTH PROBLEM.

1. Do you have difficulty seeing, even if wearing glasses? 2. Do you have difficulty hearing, even if using a hearing aid? 3. Do you have difficulty walking or climbing steps?4. Do you have difficulty remembering or concentrating?5. Do you have difficulty (with self-care such as) washing all over or

dressing? 6. Using your usual (customary) language, do you have difficulty

communicating, for example understanding or being understood?

Response categories:a. No – no difficulty b. Yes – some difficulty c. Yes – a lot of difficulty d. Cannot do at all

Impact: Transformative effectCollecting data on disability creates demand for more inclusiveservices.

COMMUNITY• Process described as ‘an open door’ • But… it creates expectations of services• Community sensitisation now includes disability

SERVICE PROVIDERS• Data collectors reported feeling ‘closer to the community’• But… they felt that they had a responsibility to provide

information or referrals• Service providers started thinking about inclusion and making

adaptations (referrals, wheelchairs…)

Impact: Transformative effectAT NATIONAL LEVEL• Data collected is linked to national management information

systems (Tanzania)

• Data is compared to available sources

Tanzania 2008 Disability Survey severe or completely limiting difficulties*

Tanzania Pilot: severe or completely limiting difficulties (excluding seeing)

Tanzania Pilot: severe or completely limiting difficulties

0% 5% 10% 15% 20%

12.1%

9.5%

19.3%

*Tanzania Disability Survey Report 2008, First Round

Impact: Comparability of data

Others

Communication

Self Care

Remembering

Walking

Hearing

Seeing

-1.00% 1.00% 3.00% 5.00% 7.00% 9.00% 11.00% 13.00% 15.00%

0%

1%

1%

1%

1%

2%

0.90%

1.70%

3.40%

2.10%

4.00%

0.88%

2.20%

4.70%

4.40%

2.30%

14.60%

Sightsavers Pilot

2008 Disability Survey, Tanzania Mainland (ru-ral)*

2012 Census (Ruvuma)**

*Tanzania Disability Survey Report 2008, First Round (http://www.nbs.go.tz/tnada/index.php/catalog/5) ** Tanzania 2012 Census (http://www.nbs.go.tz/)

Impact: Comparability of data (India)

2012 Census: Bhopal adults

Telengana*: Direct questioning

Pilot: Are you disabled?

Telengana*: WG severe or completely limiting difficulties

Pilot: severe or completely limiting difficulties (excluding seeing)

Pilot: severe or completely limiting difficulties

4.1%

3.8%

0.6%

7.5%

9.0%

17.5%

* International Centre for Evidence in Disability (ICED), The Telengana Disability Study, India Country Report, London School of Hygiene and Tropical Medicine (LSHTM) 2014 [available from http://disabilitycentre.lshtm.ac.uk]

Commitment and Sustainability

AT PROJECT LEVEL• Data on disability is still being collected

• Testing data disaggregation in Mass Drug Administration (new pilot in Ghana)

• Services are reviewed to be more gender and disability inclusive – Inclusive Eye Health Pilot in India

AT NATIONAL LEVEL• Continue to link the data collected to national management

information systems (new Ghana pilot)

• Learning is shared with governments and National Statistical Offices

Commitment and Sustainability

Projectlevel

Integration in existing tools

Partners continue to

collect data on disability

National levelIntegration in

existing reporting

mechanisms (where

available)

Sharing and disseminating

learning at national level

SDG indicators

?

Useful lessons in the SDG context

• There is no single approach to data collection – context specific

• Integration of the WG questionnaire into existing practices can improve efficiency and reduce workload and cost

• Different definitions of disability give different results and affect the comparability of the data

• Sensitisation and training of stakeholders ensure buy-in• Training stakeholders on data analysis ensure ownership• Promotion of the project to governments to ensure data is

used for decision making

Further information:http://www.sightsavers.org/everybodycounts/

pthivillier@sightsavers.org

Thank you!