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Neurodiversity and healthcare communications – do we know enough and do we do enough?

By Robert Goodwin

Robert Goodwin

I was diagnosed with dyslexia and dyspraxia at a young age. However, the terms neurodiversity and neurodivergent are fairly new to me and so I wondered if the same could be said for the rest of society. I went to Google Trends to find the answer. The terms were first coined in 1998 – yet in the UK it has only been in the past three years that the search term ‘neurodiversity’ has grown in relative popularity. Before then the term was hardly explored. While this increase demonstrates an appetite for education on the topic, I question whether we know and do enough in the healthcare communications industry to understand and adapt to the needs of neurodivergent people in everything we do.

This is important because up to one in five adults exhibits some form of neurodiverse condition, affecting how individuals process or respond to information. This means they behave, think, process or interpret information in ways that differ to most other people and includes conditions such as: autism, ADHD, dyslexia, dyspraxia, dyscalculia, dysgraphia and tic disorders like Tourette’s syndrome.

As an industry we have been pretty good at championing health literacy guidelines and practices, so that educational materials and resources are accessible and understandable to most. We consider the use of plain language, the use of active rather than passive sentences, layout of information and which platforms and formats are used. Industry doesn’t get it right every time, but the information produced is more considered today than in previous years.

A critical step towards this behaviour shift was research and open discussion about the general population’s low health literacy and how to meet this need. This paved the way for clear guidance frameworks that act as the foundation for lasting change in how we develop educational materials.

Surprisingly though, when comparing the number of articles on PubMed on the accessibility of health information for the neurodiverse community (n=110) versus the accessibility of health information for the general population (n=9,644), we see that this constitutes just 1% of research. This raises the question – does our industry know enough about the nuances of neurodiversity to ensure that all communications are being developed to the standard they could be?

Given that 20% of adults are neurodivergent, including patients, healthcare professionals and other stakeholders that we aim to reach, is this population being appropriately represented? Is this group being engaged in a way that supports people to share their views, or those of the neurodiverse community that they belong to, effectively?

In the absence of the research, we need to get comfortable talking about neurodiversity. I encourage open dialogue with the neurodiverse population to identify where improvements can be made. A starting point for all to consider is to think about your business’ awareness of neurodiversity and its different forms. Does your current operating model create an inclusive environment? Could you adjust processes to make them more inclusive and accommodate neurodiverse conditions?

Advisory board meetings, steering committee groups and other collaboration activities are our bread and butter, but how often are participants asked if they have accessibility needs beyond physical ones? What is the impact of allowing individuals to sit uncomfortably through a meeting when their needs have not been considered? In response I asked my neurodivergent colleagues which small changes industry can make to help neurodivergent people feel comfortable sharing their views. Here are their recommendations:

  • Don’t be scared to talk about neurodiversity if your intention is to listen, learn and adapt
  • It’s much easier for someone to describe their needs once asked. If this is normalised, then accessibility needs can be planned for
  • Provide pre-reads and share questions being asked ahead of meetings. Having more time helps people process information and prepare
  • When capturing flip-chart notes, ask people to nominate themselves rather than burdening someone with the role, as they may be conscious of spelling errors. Be sure to avoid correcting someone’s spelling during a meeting – it can knock their confidence
  • Avoid jargon and acronyms, and spell out complex or scientific words. Let’s normalise the fact that not knowing how to spell a new word is okay.

Simple adjustments can make a big difference. For more information on neurodiversity and accessible communications, read the British Dyslexia Associate style guide

*PubMed search conducted on 5 January 2023 

References are available on request.

Robert Goodwin is Senior Account Manager at 90TEN

24th January 2023

From: Marketing

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