Presentation from UNICEF event

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

2. 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)

3. Disability Disaggregation pilot
project
The objectives of this project are to:
• Understand whether people with disabilities are accessing
our services
• Build the evidence base on how to disaggregate routine
data by disability and share with others
• Ultimately make Sightsavers projects more inclusive of
people with disabilities.
Two projects, selected for their geographical and thematic
variety and opportunities to use new technology.

4. © 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)
6/13/2016

5. © Sightsavers
Pilot projects
• Neglected tropical
disease project
• Rural area
• Partners: MoH (NTD
dept)
• National definition of
disability similar to
CRPD and WG
• Questionnaire already
translated (except
communication Q)
• Paper tools
Tanzania: Songea
6/13/2016

6. Methods
• WG Short Set of Questions integrated in to routine data
collection tools at hospital and primary care level centres –
paper and electronic systems
• Monthly reports developed and shared for analysis in excel
and Stata
• 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 among staff
involved in pilot, data quality audits and patient exit
interviews

7. Washington Group
Introductory 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
The recommended Washington Group
cut off is at least 1 c or d

8. Impact: Transformative effect
COMMUNITY
• Process described as ‘an open door’ by the community
• Lack of introduction of the questionnaire creates confusion in
community settings
• But… it creates expectations of services
SERVICE PROVIDERS
• Data collectors reported feeling ‘closer to the community’
• But… they feel that they have a responsibility to provide information
or referrals
• Community sensitisation now includes disability
• Services start thinking about inclusion and making adaptations
(referrals, wheelchairs…)

9. Impact: Comparability of data (India)
4.1%
3.8%
0.6%
7.5%
9.0%
17.5%
0% 5% 10% 15% 20%
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
* 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]

10. Impact: Comparability of data
(Tanzania)
12.1%
9.5%
19.3%
0% 5% 10% 15% 20%
2008 Survey WG severe or completely
limiting difficulties
Pilot: severe or completely limiting
difficulties (excluding seeing)
Pilot: severe or completely limiting
difficulties
* 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]

11. Impact: Comparability of data
(Tanzania)
0.30%
1%
1%
1.20%
0.90%
1.50%
0.90%
1.70%
3.40%
2.10%
4%
0.88%
2.20%
4.70%
4.40%
2.30%
14.60%
0.00% 5.00% 10.00% 15.00%
Others
Communication
Self Care
Remembering
Walking
Hearing
Seeing
Sightsavers
Pilot
2008 Disability Survey,
Tanzania Mainland
(rural)
2012 Census
(Ruvuma)

12. Commitment and Sustainability
AT PROJECT LEVEL
• Just the start of a process towards full inclusion – creates demand
• Services are being reviewed to improve the approach to be more
gender and disability inclusive
• Testing approaches to collecting disability data in other ways, e.g.
occasional monitoring
WHAT’S NEXT?
• India: Introduction of referral mechanism to other health structures
– case for Inclusive Eye Health
• Tanzania: Provision of referrals additional treatments in camps –
case for Coordinated Approach to Eye Health
• Ghana: Developing a methodology for Mass Drug Administration

13. Commitment and Sustainability
Project
level
Integration in
existing tools
Partners
continue to
collect data on
disability
National
level
Integration in
existing reporting
mechanisms
(where available)
Sharing and
disseminating
learning at
national level
SDG
indicators
?

14. Useful lessons in the SDG context
• Sensitisation and training ensure buy-in of the
stakeholders
• Different definitions of disability will give different results –
comparability of the data will be key.
• There is no single approach to data collection, it needs to
be adapted to each context.
• Integrate the questionnaire into existing practices to
improve efficiency and reduce workload and cost.
• Train people on how to analyse the data so they can use it
for planning and decision making – ownership.
• Developing a clear advocacy plan at the outset to make
use of the data, engaging policymakers.

15. Further information:
http://www.sightsavers.org/
everybodycounts/
pthivillier@sightsavers.org
Thank you!