Stakeholder engagement, Brexit and beyond

As the prospest of a Brexit makes waves across the UK and beyond, this is the first of two posts this week from our Department, focussing on its impact and meaning. 

Elisabeth-Hill-photo-2The first post is from Elisabeth Hill, a Professor of Neurodevelopmental Disorders in the Department of Psychology where she heads up Goldsmiths Action Lab. She is also ProWarden (or elsewhere PVC) Learning Teaching Enhancement at Goldsmiths. Her work focuses on the importance of motor development for the development of cognitive domains and daily life outcomes in those with and without a range of developmental disorders. Here, she takes us from an early foray into stakeholder engagement to Brexit and beyond.

 

Around 20 years ago, towards the end of my PhD at the MRC Applied Psychology Unit (APU; now the Cognition & Brain Sciences Unit), I gave a talk to a group of professional stakeholders in my field. My focus that day was the motor skills of children with specific language impairment (SLI). One or two children in every school class meet criteria for this condition, which is diagnosed entirely on the basis of language skill. However, my research highlighted that a large proportion of children with SLI struggle with motor development and experience the same difficulties as children diagnosed with developmental coordination disorder (a motor disorder that also affects 1-2 children in every school class). These days we know that motor development has a very significant impact on early and later development of a range of areas including language and social skills. It also has an impact on longer term outcomes – at school, at work and on mental health. However, that’s now. The striking memory that I want to share is that of a speech therapist (let’s call her Joanna) speaking to me after the talk. I remember her exact words:

“your work turned on a light bulb for me. My team will now assess motor skill in every child that comes to us for a detailed language assessment. We’re failing them if we don’t”.

Fast forward a couple of years and Joanna was in another audience that I spoke to where she told me that motor screening had been implemented in her team and, as a result, a great proportion of the children assessed now received occupational therapy as well as language interventions. At the time I was astounded. It turned out that my work as a PhD student was not only well received by stakeholders, but had effected a change. It was needed on the ground and it made a difference, even though it was invisible to the great majority of those who benefitted. I’d like to think that it played a small part in improving the lives of hundreds of children seen in that one service and that those children who are now adults will have had better life outcomes because of it.

Great Britain design with 3d shape of United Kingdom map colored in blue and isolated on white background.

Great Britain design with 3d shape of United Kingdom map colored in blue and isolated on white background.

I was reminded of Joanna on the morning of 24th June 2016, as I sat bleary-eyed watching the results of the EU referendum. I was reminded of her again, later in the day, as I scoured articles and images of the night before and wondered what the Brexit vote meant for the future. I was also reminded of her when thinking about the unusually unified response of universities (coordinated by Universities UK) in their campaign to Remain. And I was further reminded of Joanna when I looked at the Leave/Remain map of the UK. One of the interesting features of this map concerns the disconnect between the pro-EU views of universities and the pro-Brexit views of their local communities. With the odd exception, only universities in London, Cambridge, Oxford and Scotland seem exempt from this. This despite universities making a significant impact on their local communities: employing a significant proportion of their workforce from the local area; providing education and opportunity for the local community; and playing a significant part in advances that make a difference to these communities (in the present and the future). The reason I thought of Joanna was that the referendum results made me realise just how much we – as academics and researchers – need to do to bridge the divide between universities and their local communities. Sitting in Lewisham, a strong Remain voting community in South East London, it is easy to forget this disconnect. Yet we should not forget that we need to engage with our local community – within Lewisham, within London and within the world – and we are in a strong position to do so.

Human head on a blackboard with the word Autism on the brain

Take, for example, the work that my colleagues (Laura Crane, Lorna GoddardLucy Henry) and I have been conducting concerning the diagnosis of autism. Autism is a developmental condition affecting the way a person experiences the world around them, and it affects around 1% of the population. This means that over 700,000 people in the UK have an autism diagnosis, and hundreds of thousands more people will be affected by the condition indirectly (e.g., parents, siblings, carers, colleagues etc). Close to 1300 people participated in our research, which identified long delays in accessing a diagnosis, dissatisfaction with the diagnostic process as a whole, and a shameful lack of support post-diagnosis. As well as publishing this work in academic articles, we have tried to make this work accessible to the broader community. We have achieved this by: writing articles for lay audiences; making short accessible videos about our findings; speaking at conferences for academics and for stakeholders; setting up a project website; and engaging with stakeholders such as the National Autistic Society and Network Autism to ensure our findings are heard. Importantly, we are also preparing a short summary of the project and its findings for the participants that so generously gave up their time to take part in the research. The fact that we had collected comprehensive and high-quality data from three key stakeholder groups (adults, parents, clinicians) allowed the National Autistic Society to run a stronger and successful campaign to reduce autism diagnosis waiting times – the Autism Diagnosis Crisis campaign. A key outcome of this campaign was that it led to the NHS receiving new recommendations to consider waiting times for autism diagnosis as a key measure of how local NHS services perform.

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Research can have an impact in different ways. Sometimes the research will be invisible by the time it is fully embedded (as for my PhD research, which most of the families that it benefitted will never have come across). In other cases, we – as researchers – need to find ways to engage with stakeholders, to help them see our work as relevant to them. We must also reflect on how we can ensure that we conduct research in a way that is relevant and accessible to others. One of our many challenges is how we articulate the relevance of our work to a wide array of communities in such a way that they are able to see the value of the work we do and to consider that it contributes to a brighter future. We may not have achieved this regarding Brexit, but perhaps lessons will be learned from this.


Prof. Elisabeth Hill widens the accessibility of her research on Twitter: @ElisabethLHill, and @GoldActionLab

You can also find her research on the web at: www.goldactionlab.co.uk and at www.autismdiagnosis.info

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