Taking disability evidence to the policy makers who need it

Taking disability evidence to the policy makers who need it

Thomas Shakespeare | 7 May 2020

How much is known about disability and development?  In particular, how much is known on how best to improve the lives of the one billion disabled people in the world?  Sadly, there are huge gaps, as the WHO and World Bank World report on disability 2011 and more recently the CEDIL-supported  evidence and gap map 2018  have demonstrated. The former was unable to provide detailed guidelines on the best interventions.  The latter found 138 eligible studies of which 53 were systematic reviews and 85 primary studies.  However, 100 studies related to health, 30 related to education, and there were relatively few studies for livelihoods and other dimensions of life.

The need for sharing experiences, data and resources is well known in the disability and development community, and many NGOs and some Disabled People’s Organisations (DPOs) have developed useful websites.  However, at the International Centre for Evidence in Disability, we believe there is a need for more rigorous evidence.  As part of the Disability-Inclusive Development initiative of DFID, we developed the Programme for Evidence to Inform Disability Action (PENDA), which supports ten impact evaluations.  Alongside this new research, we wanted to produce new tools.  And we wanted to support a stronger cadre of disability researchers in the Global South, particularly researchers with disabilities.

Out of PENDA, and in association with Sight Savers International, came the idea for a Disability Evidence Portal.  The concept is to draw on systematic reviews to produce evidence briefs which summarise what is known about a practical question, for policymakers and other practitioners in the Global South.  Having won a grant from CEDIL to develop this evidence synthesis project, we emulated the success of the Mental Health Innovation Network to produce it, drawing on their web developers, Mantaray Media, and benefitting from the experience of Onaiza Qureshi.

To ensure that the portal we develop is fit for purpose, we first consulted stakeholders to check whether we were working along the right lines. The developing portal has depended on guidance and feedback from our group of advisors with disabilities.  We have consulted regularly with DPOs such as the Commonwealth Disabled People’s  Forum and International Disability Alliance.  We have also consulted with many NGOs involved in the International Disability and Development Consortium.  We also funded a  consultant to conduct interviews with 15 representatives of DPOs, NGOs and civil servants in the Global South, who showed strong support for the initiative, but also expressed a desire to link from the evidence summaries to the research findings which underpinned them.  Needless to say, we have also been in regular touch with DFID, who fund PENDA and much of our other work at the International Centre for Evidence in Disability.   One very positive outcome of our feedback phase of interviews was a warm response from the DFID’s Disability Inclusion Helpdesk, run by Social Development Direct, who we hope to collaborate with on future evidence synthesis.  Another outcome of the consultation has been the creation of an advisory board, comprising those consulted, who will continue to give us feedback on the site, and sometimes operate as peer reviewers of evidence briefs.

The CEDIL funding has enabled us to build the prototype, and produce eight evidence briefs, and a toolkit for others to write briefs themselves. In order to make the portal a useful resource, we needed to go far beyond this skeleton.  We are extremely glad to have won funding from Wellspring Philanthropy which will enable us, within three years, to expand the number of briefs to at least 100.  Along the way, we will be consulting with our audience of users to understand better what they require in terms of evidence. 

The immediate need is to support humanitarian interventions and understand the vulnerabilities of disabled people and their families in the Covid-19 epidemic.  We will therefore be adding evidence briefs relevant to the health, social and economic problems disabled people are currently facing as soon as we can.  The lockdown necessitated by the epidemic has meant that we will not launch the portal formally until late 2020 or early 2021.  This buys us some time further to populate the site.

We hope that partners in other universities, and in NGOs and DPOs feel able to write peer-reviewed evidence briefs for the site, using the toolkit made available on the portal.  We could pay for each evidence brief that was completed satisfactorily, which seemed to us a good way of buying academic services from teams in the field, particularly those in the Global South.  Already, the majority of the evidence briefs have been written by a woman with psychosocial disabilities in the Global South.  We feel that the widest participation, either as authors or peer reviewers, would help consolidate the portal, as well as build North-South and South-South connections within the disability research world.

We hope to make the Disability Evidence Portal the go-to site for the best available scientific evidence on practical actions to improve the lives of persons with disabilities.   Doing the best research is no good unless we share the evidence with the widest audience.  For now, we would welcome your feedback on the site.  We have time to make tweaks before we promote the site far and wide.  Give us your general impression, or else tell us about accessibility, functionality or your priorities for questions that we can try to answer.  You can contact us via disabilityevidenceportal@lshtm.ac.uk or else get in touch with tom.shakespeare{at}lshtm.ac.uk

Thomas Shakespeare is a Professor of Disability Research at the London School of Hygiene and Tropical Medicine.

Visit the growing Disability Evidence Portal here: https://www.disabilityevidence.org/]

Photo credit: Albert González Farran, UNAMID

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