Moving findings into practice

I would like to come back to Ethiopia where I live and where I am from. For example, in Ethiopia, people always thought that people with disabilities are not many. And development practitioners as well as policy makers, were not giving due priority. Because they always thought that they have, first, to reach the non-disabled community, which they thought was bigger in number. That has changed after the World Disability Report revealed that 17.6% of the population has a disability. So we were able to go to the parliament, having this figure, which heavily contradicted and challenged the national census. Which always said that it was only less than 1% people with disabilities that the country has.

Then we said, this is not true and this is the World Bank and World Health Organisation report. So 17.6 is nearly one fifth of your given population. So one fifth of the given resource should go to persons with disabilities. This was used as a landmark, as a milestone, to convince the parliament that they include a checklist– one additional checklist– whenever they evaluate, whenever they review reports of the executive organ. That they check what they have achieved in terms of disability. Without this figure, 17.6%, we could have never achieved the number of laws that we have so far. The example I’d like to take is one which I think was very important in challenging our views as researchers.

And it was work that was done by Scope, which looked at the perceptions of people with disabilities in the UK and the general public. And it showed that there was a big gap there. People who were able-bodied underestimated the number of people with disabilities. And they also underestimated the amount of prejudice that people were experiencing. This research was quite important. These surveys were very helpful, because what they did was to speak to something that people working in translating evidence into policy have sometimes talked about as hitting them between the eyes. By showing this big gap in perceptions, it challenged those of us who are not disabled about how we saw disability.

And I think it has helped many of us to understand even more than we already did the importance of hearing the voices that are so often left unheard. One concrete example of a work we have done with UNESCO, in Jordan. And I remember then it was about inclusive education, where it started with doing research of understanding specifically the referral system in the country. Because you know, the minister of education wanted to understand is it really reaching all the students or children with disabilities. They genuinely actually asked for that research and that made a big difference. The moment the research findings went out, they actually reformed the system of identification of children.

So they reinforced that strategy to ensure they’re also capturing other types of possible impairments. They connected the minister of education with health in a way that it made the difference. So I really saw genuinely, it made a difference in terms of translating that. And it wasn’t impossible. I mean it didn’t take a lot of financial effort or time. So I’ll give you an example of a place, of Tajikistan where research really worked well in terms of influencing the policy. In that particular case, the research led to a four-year strategy development on rehabilitation, which was fully– which is fully owned by the ministry and by the government.

And that– and again, the basis and the key principle behind was because the ministry felt that they were the ones who were driving the whole process, they were the ones who were leading the whole process, with our methodological and technical support. I’m very happy to talk about the intervention that I developed for stroke survivors in India, just by publishing the results of the feasibility of such an intervention. There are lots of hospitals, there are lots of state government, disability departments, and health departments, which came back to us asking can we try this out in our context?

Can we include all the patients, who come to the government hospital for stroke care, get your intervention and then see whether it helps them or not?

I’d like to answer this by looking at the three communities that are involved in all of this. So first of all, there are the researchers who have a responsibility to understand what policymakers need to know. They need to look at the challenges that the policymakers are facing and come up with research designs and topics that will help them. And ideally, in fact, to anticipate them to think of problems that will arise but maybe the policymakers haven’t got them on their agenda yet. The second group are obviously the policy makers and that’s becoming a particular challenge.

We’re speaking in 2020 and as we look around the world, it’s clear that there are a number of political leaders who seem to have got through life completely untouched by the enlightenment and the principles of science and logic. So that is a difficulty, but on the other hand, there are some amazing examples and I’m thinking particularly of New Zealand. I bet some other countries that are led by lead– have got leaders that really understand and respect the need for evidence. Those are two communities, but there’s a third community and they’re in the middle.

These are the knowledge brokers, the knowledge translators, and their responsibility is to help the policymakers to frame their questions in a way that can be answered by research. And to help the researchers to bring their evidence together. Often taking the researchers out of their disciplinary silos, and working across the entire range of evidence to provide solutions that are actionable. I want to draw some lessons from the COVID-19 pandemic that we are going through. For instance, we know that the COVID-19 pandemic is being seriously researched and scientists are busy trying to come up with vaccinations as well as cure. Unfortunately, decisions are made by politicians and resources are allocated as well as controlled by politicians.

So the huge disconnect between the knowledge and the decisions as well as the resources is a clear indication of what researchers are going through.

I think the road between the publication, if I say, and the Office of the minister of X sector is a bit long now. Even sometimes it doesn’t– it’s blocked. And we need to really think very systematically how we would open the pathway between the two. I think, efforts to translate the dry academic findings into a language that policymakers understand is one of the key issues. I think, from my experience, researchers in disability have to understand the systems in place first, to do what they are trying to do. They can do relevant research, they can also say that their research is really, really rigorous in terms of what they are trying to do. However, it has to fit with the context.

And to fit it with the context, you need to understand the system and then say this is exactly where your research evidence can fit into the gaps that are there in the system. Speak the language in a place which is very different to what you speak. So you might be a researcher, but when you’re talking to a policymaker, have stories and make stories with whatever data you have. So I’d like to give an advice for researchers that we– they make sure that they allocate enough time as well as resource to communicate their findings. One, for those who were involved in the research including key informants for focus group discussions and so on, so forth.

But secondly, and above all, that they make sure that their findings reach to the pertinent policymakers at all levels. That way, they can make sure that their research findings are well understood as well as get the proper ownership. But on top of all, they can make sure that their research findings are felt and lived longer than the researcher period. If we really want to make a change, it’s not just about providing the information. It’s about pulling everything together in a comprehensive strategy to try to make the world a better place. And in the context of the work that you’re doing, to make it a better place for some of the most disadvantaged people in our society.