27.11.2019 On evidence of disability and data: recap from the ICED Conference 2019

9 CBM colleagues gather for a photo in front of a CBM poster-presentation
CBM colleagues at the ICED Conference, November 2019.

Written by Petra Kiel from CBM

On 5 and 6 November, around 180 delegates from around the world, including many researchers with disabilities, gathered at the third International Conference on Disability and Development at the International Centre for Evidence in Disability (ICED) in London. The conference was co-hosted by ICED and Sightsavers, in partnership with CBM, Action for Disability and Development and Help Age International, and supported by the Department for International Development.

The event focused on new research findings, methodologies and tools and implications of evidence for policy and practice. Participants shared experience on the collection of disability data and the use of evidence in policy and decision-making.

An opening keynote speech tried to shed light on the questions: Where are we with evidence in disability? What works to improve the lives of people with disabilities in low- and middle-income countries? The overall findings indicate that very little robust evidence exists on disability; about half of disability studies focus on health and disability. Studies on empowerment of persons with disability ranked lowest. Of the limited amount of impact studies available, most cover a narrow geographic and thematic area, and many are of low quality.

Another study revealed that active political participation often only exists on paper, and that in many countries, barriers still exist that prevent people with disabilities from engaging in political life. Stigma is particularly high against persons with intellectual and mental disabilities.

Dr. Diego Santana-Hernández from CBM presented the poster “The road from global guidelines based on field evidence to implementation of national plans in Ear and Hearing Care (EHC).” It outlined CBM’s advocacy work on a global level with WHO, regional networking efforts with EHC fora in Asia, America and Africa and country level action with ministries of health, eventually leading to rights-based inclusive community work and change in peoples’ lives.  

On the topic of EHC, I attended the presentation of a new tool that allows for the rapid assessment of hearing loss. This will allow for quick and broad coverage of conditions leading to hearing loss within a broad population. The testing of the tool and related study confirmed that with the mobile-based audiometry tool, a non-specialist can be trained to accurately assess hearing and identify need for treatment.

Some key takeaways include remarks made by Sightsavers and others during the plenary sessions:

  • We need to improve the learning architecture within the disability research sector so that the disability movement, the wider development and government community and civil society organisations have access to each other’s knowledge and evidence.
  • Research findings need to be translated into something meaningful and useful for the audience.
  • Research needs to become more localised and led by low- and middle-income countries. Currently, a lot of research is conducted by researchers from high income countries, and that is also where the research money mostly goes.
  • Researchers needs to improve analysing and summarising findings. Also, implementers need to improve by reading, learning and adapting their action based on the evidence.
  • What works—and what does not—depends on the context and audience; everyone requires their own approach; everyone needs their own solution.
  • A lot of time is spent on developing surveys and thinking about the right questions. There is a need for more consideration on the context and timing, on how to prepare for surveys in difficult situations and how to ask questions while not putting people and programming at risk.
  • When using the Washington Group Questions, we should be mindful that they may not identify all persons with disability, which may lead to raising expectations or putting people at risk.
  • Studies need enough lead time from approval to implementation. For example, receiving ethical approval can take a long time.
  • There is a need to creating learning spaces. An ongoing reflection about whether a project is moving in the right direction can be more useful than a one-time evaluation that tells civil society organisations whether they did a good job. Experience from civil society organisations needs to feed into other stakeholders.