disaggregating routine monitoring data by disability – an example from eye health

Disaggregating routine

monitoring data by disability

-an example from

eye health

Emma Jolley, Pauline Thivillier, Dominic Haslam & Archana

Bhambal

Sightsavers

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

• Two streams of work:• Eye health (includes NTDs)

• Inclusion, focusing on gender and disability

Eye Health Programmes• Globally 285 million people with visual

impairments

• 80% of this is avoidable: cataract, uncorrected refractive error, trachoma…

• 90% live in developing countries

• Ultimate strategic aim for governments to ensure good quality eye care is available to all people as an integral part of wider health systems

Monitoring equity of access

How inclusive are your eye health programmes in terms of gender?

In 2014: – 49% cataract operations were on females– 54% trachoma operations on females– 52% glasses dispensed to females

But >60% visual impairment found in females

What about people with disabilities?

• What is the prevalence of visual impairment in this group?

• How are they accessing services?

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

• Ultimately make Sightsavers projects more inclusive of people with disabilities.

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

Ghana

Methods

• Data on disability integrated in to routine data collection tools at hospital and primary care level – 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 [not addressed today]

Washington Group Short Set“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 by others)?”

Response categories:a) No, no difficulty, b) Yes, some difficulty, c) Yes, a lot of difficulty and d) Cannot do it at all.

7. Are you disabled? Yes/ No

Results from Bhopal, India

Data

• 21,681 patients’ data collected in 15 months (until December 2015)

• 52% female, 48% male

• Mean (and median) age 45 years

• 58% at hospital, 42% at primary care

Series1

0% 10% 20%

0.6%

9.0%

17.5%

Initial data from Bhopal, IndiaWhat proportion of our clients have a disability?

17.5% of project clients report severe or completely limiting difficulties in at least one domain.

9% when we exclude the sight domain.

0.6% when we ask them directly if they are disabled

How does this compare?

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]

Which factors are associated with disability?

Variable Values WG severe difficulties (6Q)

WG severe difficulties (6Q) excluding seeing

Are you disabled?

    Odds ratioSex Male - - -

Female 1.4*** 2.1*** 0.7*         Age - binary <50 - - -

50+ 3.4*** 3.3*** 1.7**         Location Hospital - - -

Primary centre 8.2*** 42.5*** 5.5***

* p-value < 0.05 ** p-value < 0.01***p-value < 0.001

Univariate associations with disability measures

Which factors are associated with disability?

* p-value < 0.05 ** p-value < 0.01***p-value < 0.001

 Variable  Values WG severe difficulties (6Q)

WG severe difficulties (6Q) excluding seeing

Are you disabled?

Odds ratioSex Male -   -  Female 1.2*** 1.7*** 0.5***         Age - binary <50 - - -

  50+ 3.6*** 3.5*** 1.5*         Location Hospital - - -  VC 8.4*** 40.8*** 5.8***

Multivariate associations with disability measures

Lessons and next steps• A significant proportion of clients have functional difficulties

• The women attending our services are more likely to have difficulties functioning than men and are less likely than men to attend hospital services [not presented]

• People with disabilities, especially non-visual disabilities, are much less likely to go to hospital services.

• 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

• 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.

Further information:

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

ejolley@sightsavers.orgpthivillier@sightsavers.orgfsmith@sightsavers.org