Science Communication and Public Engagement for Research about Neurodiversity and Disabilities

Blog 3 of 4 in the Insights From Researchers on Co-production blog series

EPIC blogs usually focus on parent, teacher and clinician audiences. This series of blogs are the findings from a workshop for researchers entitled Overcoming barriers to co-production with children and adults with neurodevelopmental disabilities which took place during the Neurodevelopmental Disorders Annual Seminar 2022 held in Edinburgh. Following on from this series we will have the Insights from a Lived experience on Co-production blog series which will focus on getting involved in decision making about research from a parent perspective.

Dissemination of research findings is about sharing the results with people who the research is relevant to (neurodivergent/disabled people, families/carers, policy makers, clinicians, educators, other researchers, people who are interested and the wider public). This can take many forms; public talks, websites, blog posts, podcasts, YouTube videos, social media, science festival events, art shows, television/radio appearances, comic book stories, animated videos, infographics, museum exhibitions, school outreach, or events at zoos, shopping centres, or parks.

The research team should think strategically about how best to disseminate their findings and what are their aims are and what is the potential impact they hope to have. Developing a Public Engagement Strategy for a project, research group, or department can be helpful in clarifying the aims, context, risks, and plan of action (NCCPE, 2017).  Often researchers think the purpose of science communication is to inform the public about research findings or create better understanding. However, there are many other benefits; reducing stigma, creating a sense of community, improving self-esteem, shifting culture, providing information that is comforting, creating hope, inspiring young people to work in research, and changing attitudes and behaviour. There are benefits to the research team as well such as i) having an opportunity to hear people’s feedback and concerns, ii) improving the reputation or increasing the visibility of the research team leading to more recruitment (both for co-production or research studies), iii) opportunity to establish and maintain connections (add names to a mailing list, social media connections). Developing a strategy can also highlight the necessary context for the aims to be met: support from university engagement officers, public engagement grants, perhaps making part of a research assistant/post-doc’s job description to manage the public engagement, training requirements/courses available, and working with your University’s overarching public engagement strategy. A logic model (NCCPE, 2017) can be used to evaluate the short-term outcomes and long-term impact. The evaluation can be characterised as a reflective and iterative process where the public engagement strategy is evaluated each year and updated accordingly. Guidelines from den Houting (2021) has two templates for how you might start to develop a plan for a science communication event.

The science communication or public engagement event can also be co-created with the target audience (e.g. neurodivergent people, teachers, parents). Their contribution will ensure the findings are accessible and that the message of the science communication is what the researchers intended to say and sensitive to the community. Neurodivergent artists or graphic designers can help with the design of output materials or make a brand logo for the research group. For example Emma Ferrier made the logo for my PhD study and the logo for EPIC (see below) . See her website here https://www.emmanovella.co.uk

Positioning an event within larger events or initiative is another way to reach more people e.g. organising events around Autism Acceptance month. High quality science communication should always aim to place the new findings within the context of previous research/future research plans and within the context of the individual’s everyday life. For example, if a researcher is sharing findings about a recent project looking at sensory experiences, the science communication should highlight how the findings may be affecting autistic people’s daily experiences. See below for some creative examples of public engagement work in the area of neurodiversity, disabilities, and mental health. 

References and more resources: 

Reed, M. S., Duncan, S., Manners, P., Pound, D., Armitage, L., Frewer, L. J., … & Frost, B. (2018). A common standard for the evaluation of public engagement with research. Research for All. DOI: 10.18546/RFA.02.1.13. <- excellent paper, one of my favourites. Includes a structure for evaluating public engagement and creative ways to collect the feedback

Helpful website with training and more resources: https://www.fasttrackimpact.com

den Houting, J. (2021). Participatory and Inclusive Autism Research Practice Guides. Brisbane. Autism CRC.https://www.autismcrc.com.au/access/sites/default/files/resources/Participatory_and_Inclusive_Autism_Research_Practice_Guides.pdf

National Co-ordinating Centre for Public Engagement (2017) ‘Developing a public engagement strategy’ ‘guide Available at https://www.publicengagement.ac.uk/sites/default/files/publication/developing_a_public_engagement_strategy.pdf

National Co-ordinating Centre for Public Engagement (2017) How to evaluate your public engagement support programme Available at https://www.publicengagement.ac.uk/sites/default/files/publication/evaluating_your_support_programme.pdf

Good practices for science communication on social media https://questproject.eu/recommendations-for-science-communication-on-social-media/

The Scotland Policy and Research Exchange website has guidance on how to work with policy makers https://spre.scot

https://www.parliament.scot/chamber-and-committees/research-prepared-for-parliament/about-research

Seven principles for public engagement in science and innovation policymaking. A guide from Nesta’s Inclusive Innovation team https://media.nesta.org.uk/documents/Seven_principles_HlLwdow.pdf

Creative examples of public engagement work for research on mental health and disabilities 

https://www.ucl.ac.uk/ioe/news/2017/jun/toolkit-released-bust-stigmas-about-autism

https://blogs.exeter.ac.uk/exploringdiagnosis/about-us/public-engagement-strategy/

https://www.publicengagement.ac.uk/do-engagement/inspire-me/case-studies

https://braininstitute.ca/resources/pond-youth-digital-stories

https://www.comorment.uio.no/press-and-outreach/science-festival-activities/risk-and-resilience.html


This workshop was funded by the University of Edinburgh College of Medicine and Veterinary Medicine Public Engagement Seed Fund through the Institutional Strategic Support Fund.

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