This article discusses the importance of global disability research and evidence and asks how we can increase important knowledge sharing around this topic.
The importance of asking the right questions
How much is known about disability and development? Specifically, how much is known on how best to improve the lives of the one billion disabled people in the world? Unfortunately, there are still huge gaps – as the World Report on Disability (2011) and more recently the Centre of Evidence for Developmental Impact and Learning’s Evidence and Gap Map (2018) have demonstrated. While the World Report on Disability was unable to provide detailed guidelines on the best interventions for people with disabilities, the search conducted for the Evidence Gap Map found 138 relevant studies on the topic. Out of these, only 53 were systematic reviews (considered the gold standard when it comes to summarising the best available evidence; see step 1.18) and 85 were primary studies. Out of the total, however, 100 studies related to health, 30 related to education, and there were relatively few studies conducted on livelihoods and other dimensions of life that impact disability. The continuing gap of evidence on the multidimensional impact of disability therefore, needs to be prioritised, and we need to ask the right questions.
Knowledge sharing through digital solutions
The need for sharing experiences, data and resources to answer these questions has long been promoted in the disability and development community. Many NGOs and some Disabled People’s Organisations (DPOs) have developed useful websites for this purpose. However, there is a need for more rigorous evidence. As part of the Disability-Inclusive Development initiative of DFID, the International Centre for Evidence
in Disability developed the Programme for Evidence to Inform Disability Action (PENDA)
. PENDA aims to support ten impact evaluations to understand and assess what works in the area of Disability Inclusive Development (i.e ensuring that development approaches are inclusive of and accessible to persons with disabilities). Alongside this new research, was the need to produce new tools, particularly those that could support a stronger cadre of disability researchers in the Global South – specifically researchers with disabilities.
In order to inform decisions on what are the effective mechanisms for improving outcomes for people with disabilities, there is an urgent need to do three inter-related things:
- To document, in plain accessible language (understandable outside the realm of academia), what knowledge exists about best practices that can be identified for people with disabilities in LMIC
- To preferentially seek information in response to questions developed in consultation with a wide range of stakeholders
- To identify where gaps in knowledge relevant to low and middle income countries exist, particularly when evidence from high income countries cannot be translated and there is need for new evidence
Out of PENDA, and in association with Sight Savers International, came support for an evidence synthesis project known as the Disability Evidence Portal
. The goal being to draw on systematic reviews to produce evidence briefs (see step 1.18). Evidence briefs summarise what is known in relation to a practical question about disability access across the themes of health, livelihoods, stigma, employment and education. Best-practice evidence is then synthesised into actionable recommendations that are accessible to policymakers and other practitioners in low and middle income countries.
Driving inclusion into development
It was essential that the needs of people with disabilities are embedded into any projects focussing on knowledge sharing within the area of Disability Inclusive Development. For the portal, this meant ensuring that persons with disabilities and DPOs were engaged from the beginning. This involved exploring their expectations and needs for knowledge on disability, how to make this evidence accessible to them and to make sure these learnings were integrated into the portal’s outcomes. Repeated stakeholder consultations were held for guidance and feedback from a group of advisors with disabilities as well as regular consultation with NGOs involved in the International Disability and Development Consortium and DPOs such as the Commonwealth Disabled People’s Forum
and International Disability Alliance
. Another outcome of the consultation has been the creation of an advisory board, who can continue to providing feedback on the portal as well as contribute to the peer review of evidence briefs.
The journey to high-quality evidence synthesis
Evidence briefs on the Disability Evidence Portal are developed through a three-step process:
- A question is identified, followed by a thorough search of the literature (prioritising reviews) on the topic using multiple online databases
- Once a final set of relevant papers on the topic are identified, a database for extracting information is created. Then, evidence and recommendations from the papers are extracted and entered into a spreadsheet to keep track of important details linked to the key question. A rating checklist is used to assess how feasible, accurate, relevant and equitable the evidence synthesised is. This can help the users understand the strength of the evidence and whether the findings are applicable to them. Once the data is extracted, the process of synthesis of findings begins. Summarised challenges and evidence-informed recommendations are written up into a digestible language and format answering the question outlined
Although this ‘review of reviews’ prioritises literature from low and middle income countries, recommendations based on studies conducted in high income countries are sometimes drawn from the dataset. This practice also presents an opportunity to highlight and advise research priorities for evidence from low and middle income countries as well as to propose which good practices from high income countries might be transferrable to different settings.
The Disability Evidence Portal was developed as an approach to create and share accessible evidence synthesis for policy makers and other key actors with the power to implement changes in policy and practice. Developing clear recommendations for each portal question facilitates informed decision-making.
Activity for students
This activity will allow you to familiarise yourself with the evidence promoted through the Disability Evidence Portal by reviewing an evidence brief and its recommendations. We will ask you to think through whether these are feasible and relevant for policy makers from a wide variety of resource settings.
: Begin your exploration by accessing the Disability Evidence Portal
and identifying a question and evidence brief
you are interested in. You can also review these by themes which were adapted using the World Health Organization’s Community-based Rehabilitation (CBR) Matrix here
: Once you’ve found and read through an evidence brief, critically review the findings by thinking through the following considerations:
- How many reviews or peer-reviewed articles did the evidence brief utilise to answer the question? Do you think these were sufficient given the topic?
- What were the evidence-based recommendations proposed through the literature to answer the question?
- Did you identify any gaps within the evidence? Is there a need for conducting another evidence brief, more studies on the topic or higher quality syntheses?
These are some of the reflections and analyses taken into consideration when synthesising evidence around Disability Inclusive Development. Critical considerations around inclusive literature, relevance and feasibility are essential when reviewing evidence around Disability. This is to ensure that the actionable recommendations being proposed are appropriate for decision makers in a variety of resource settings, and to facilitate changes policy and practice. At all times, the focus of evidence synthesis around Disability Inclusive Development should be to enable and empower stakeholders to inform and improve their policies and strategies around disability at the local, national and international level.
Get in touch:
The Disability Evidence Portal also welcomes early-career researchers, MSc students, partners in other universities, and in NGOs and DPOs from the Global South to write peer-reviewed evidence briefs for the site, using the toolkit
made available on the portal. The portal embeds inclusive participation around its principle for knowledge translation as well as building North-South and South-South connections within the disability research world.
You can contact us via email@example.com
or else get in touch with firstname.lastname@example.org
© London School of Hygiene & Tropical Medicine 2020