In late September I travelled to Bhopal to revisit the disability disaggregation pilot happening there and take stock of what we have learned in the past year.
Of course it was wonderful to see my colleagues on this project again, but equally it was exciting to learn how the project had progressed and find out whether or not they felt the project was a success after the year of hard work.
In July last year my colleague Archana wrote about how the project got started and the initial enthusiasm of our partners to collect the disability disaggregated data. The project partners are the Sewa Sedan Eye Hospital and AARAMBH, a community based organisation that works with vulnerable people in the Bhopal slums. Between them they are educating and mobilising poor communities about their eye health needs and helping them to get the care they need. The data disaggregation pilot was designed to tell us whether or not the disabled people among the communities are accessing care as much as their non-disabled counterparts – vital information if we want our programmes to be disability inclusive.
On this visit I met again with the partners and the staff who have worked on the project. We spent two days discussing how the project has progressed and pinpointing the bits that have gone well – as well as those that have gone less well. Although we didn’t have all the data in at that time we looked through some preliminary results to try and make sense of what they told us about how people with disabilities access the care.
We collected data
Simple as it may seem, the main message I took from the meeting was that we did it! We managed to change the data system in a way that allowed us to capture data on disability from nearly 20,000 patients over the course of a year with very few errors or problems in the data. Although many people with disabilities are accessing health services from our programmes, we don’t think we are seeing enough people at the hospital, where the specialist eye services are provided, who need our help. We think that some barriers exist between where people live and the hospital that are preventing both people with disabilities and women from coming as much as people without disabilities and men.
So what’s the answer?
Of course there remain problems in the process of collecting and analysing the data which need to be ironed out before we can say that we have a system that works.
A main challenge remains how the data is analysed as its important it can be done quickly and simply by the people who need to use the data to make decisions.
A second important challenge which we have already gone some way to solving is that simply asking the questions raises expectations among both staff and clients as to what services can be provided. By asking our patients about different aspects of their health, they often expect us to be able to offer them solutions, even though our expertise is often limited to eye health. By establishing more and better referral links to other health service providers in the area we can make sure that any problems they tell us about can be seen by an appropriate health specialist as soon as possible.
Appetite for change
As well as raising our patients’ expectations, our partners are now expecting more of the services we deliver together and asking for help to make them more inclusive for people with disabilities. Both the data we have collected and the process of learning about disability itself has raised awareness that we can and must do more for people who need our services but currently can’t access them. We will work alongside our partners to review the entire programme – from design to evaluation – to ensure that disability inclusion is considered and optimised at every stage. We are in the process of developing an approach to inclusive eye health, and we all hope that we will be able to improve our programmes to be as inclusive as possible so that one day the data we collect will show that everyone can access our services equally, regardless of sex or disability.
The final project report from India will be available soon on this website.
By Emma Jolley, Technical Advisor for Health and Disability Research at Sightsavers