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Impactful science communication: Creating accessible research summaries

Lottie Gasparini

LifeCourse Cohort Coordinators Forum

19^th June 2024

Guidelines available here: https://osf.io/ydkw9/; Email me: loretta.gasparini@mcri.edu.au

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Language

Guidelines available here: https://osf.io/ydkw9/; Email me: loretta.gasparini@mcri.edu.au

Murdoch Children’s Research Institute 2023

Background about myself: PhD student in the S&L group supervised by Ange, Melissa, Daisy. Predictors and intervention targets to improve children’s language development.

Language is the system of communication that involves us organizing the sounds we hear into categories, knowing word meanings (vocabulary), combing parts of words and words into sentences (grammar) and appropriately using language in different contexts.

Note that while language and speech are closely related, we make a distinction where speech is more about programming and executing the movement of our mouth, tongue and lips to produce intelligible speech. Language is also related to hearing, which is required to hear and process spoken language (but not sign language). And reading and writing are the use of language in written form, so again they are closely related to language but we do consider them separate constructs.

Evident that I need to take care to communicate to the population I research.

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Language and communication difficulties

7%

3%

No known cause

Guidelines available here: https://osf.io/ydkw9/; Email me: loretta.gasparini@mcri.edu.au

Murdoch Children’s Research Institute 2023

But language and communication difficulties might be more common than you expect, and I would argue that anyone conducting health, medical and developmental research should be aware of language and communication difficulties amongst their patient and participant groups.

Firstly, language disorder has an estimated prevalence of 10% across the population, so no matter who you work with, about 10% has a language disorder. Language difficulties include difficulties learning and remembering words, or producing or understanding sentences with more complex grammar. We we define a language disorder as when an individual has language difficulties that impact their day to day life. In about one-third of cases we can attribute the LD to another condition, like ID, autism or a genetic syndrome. In two-thirds of cases (7%), we can’t attribute it to any other condition which means it’s difficult to identify and a lot of adolescents and adults in particular are undiagnosed. We call this DLD. If you’ve never heard of DLD you’re not alone. A recent survey found that only 20% of the general population has heard of DLD – compared to autism, ADHD and dyslexia where at least 97% of participants had heard of them, even though the prevalence and impacts of LD are no smaller. Language has been found to have far-reaching impacts on socio-emotional, education, employment and quality of life outcomes, with an inter-generational impact. So it’s important to consider that 1 in every 10 people has day-to-day language difficulties.

Further, various other cognitive and developmental conditions have high co-occurrences with LD or language difficulties, including Deafness, autism, ADHD, dyslexia, and speech disorders, so if you work with any of these communities you are working with a greater than 10% prevalence.

There is a genetic component to language disorders, so many parents of children with these conditions may have similar difficulties as their children, including language difficulties. Even if they do not meet diagnostic thresholds they might have language difficulties.

And language abilities also strongly follow the gradient of socioeconomic disadvantage. So if you work with disadvantaged communities or in a field where disadvantaged individuals are disproportionately affected, then you are working with a disproportionate number of individuals with language difficulties.

And I haven’t even touched on reading or other communication difficulties in their own right (although like I said, they do tend to co-occur with language difficulties). A staggering 44% of Australian adults don’t have the literacy skills they need for everyday life (https://www.abs.gov.au/ausstats/abs@.nsf/Lookup/4228.0main+features992011-2012). Stress also impacts our ability to learn and remember new information.

Think about the way you write your research findings – full of complex language structures and jargon. Anyone outside of your language field might struggle to understand it, let alone the vast numbers of individuals I’m talking about who have language, reading or communication difficulties.

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Patient and public involvement

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Murdoch Children’s Research Institute 2023

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Plain Language Summaries

Guidelines available here: https://osf.io/ydkw9/; Email me: loretta.gasparini@mcri.edu.au

Murdoch Children’s Research Institute 2023

Plain Language Summaries are short summaries of peer-reviewed research written in everyday language.

They can make it easier for the patients and the public to access research. This includes individuals with language difficulties

Hopefully I’ve convinced you of the importance of PLS. But PLS are not created very often, and there are some barriers to creating PLS. A recent review of biomedical and health journals found that only 5% contain instructions for creating a Plain Language Summary. Only about 1.5% of all included journals require a Plain Language Summary.

Further, many PLS guidelines are created with the goal of communicating research to other professionals but do not necessarily consider the communication needs of individuals with language, reading or communication disorders.

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Open Accessible Summaries in Language Studies (OASIS)

Marsden et al. (2018) oasis-database.org

Guidelines available here: https://osf.io/ydkw9/; Email me: loretta.gasparini@mcri.edu.au

Murdoch Children’s Research Institute 2023

OASIS is an existing platform.

Open Accessible Summaries in Language Studies (OASIS) is an online database that hosts 1-page, open access, accessible summaries of research papers on language learning, use, and education. Some journals require authors to create an OASIS summary, but in fact anyone who has published a paper on language learning, use, and education can voluntarily create a summary using their templates and instructions and email it to them to have it added to their database. I really recommend everyone goes and checks out OASIS and consider submitting research summaries to their database.

OASIS provides some nice instructions and tips on how to write your summary using accessible language.

The OASIS summary using their template looks like this image. For researchers like me, this is a nice short summary, in a format and the Times New Roman font I am familiar with.

But I think this page of text would still be daunting for people outside of research, including people with language or reading difficulties. Even if the language is written in a completely accessible way, it doesn’t really look attractive or interesting.

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Plain Language Summaries for a wide audience

Available here: https://osf.io/ydkw9/
Images, colour and white space
Readability statistics
Integrating tips from various sources [1-4]
How to create images [2,5]
How to create a video summary
Sharing on social media
Share with advocacy groups

[1] Marsden et al. (2018), [2] Changepeople.org (2021), [3] Federal Plain Language Guidelines (2011), [4] National Adult Literacy Agency (2008), [5] Ibrahim (2018)

Guidelines available here: https://osf.io/ydkw9/; Email me: loretta.gasparini@mcri.edu.au

Murdoch Children’s Research Institute 2023

So I have worked on creating guidelines for researchers to create plain language summaries that are appealing to a wider audience, including people with DLD. I am doing this work along with Shaun Ziegenfusz and Nat Turner from The DLD Project, Emily Jackson, Suze Leitao and Michelle St Clair from Engage with DLD (E-DLD). And have received feedback from an implementation scientist and an adult with DLD.

The guidelines and templates are available at this link, which I’ve got on all the slides, and you can email me after if you miss it.

You can see here a screenshot of a research summary I have created. The content is pretty much the same as in the OASIS summary on the last slide, but you can see I have added an image for each section, there is more white space and more colour.

I have developed guidelines on how to create these summaries, which includes tips from various existing resources, inclduing some tips on how to use the in-built readability statistics in your word processor – these check for whether words and sentences are too long.

I also added some guidelines on how to find and create visuals to complement your written summary.

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Guidelines available here: https://osf.io/ydkw9/; Email me: loretta.gasparini@mcri.edu.au

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[1] Morison et al. (2024)

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[Title]

[Citation].This summary has a CC BY-NC-SA license.

3. Image summarising the key outcome

[1. Key outcome]

[4. Units of outcome]

X

[2. Outcome data]

3. Image summarising the key outcome

[1. Key outcome]

[4. Units of outcome]

X

[2. Outcome data]

Learn more here: [link]

Guidelines available here: https://osf.io/ydkw9/; Email me: loretta.gasparini@mcri.edu.au

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Language score at 11 years

Low

High

Correctly identified: Yes No

One minute survey predicts 3 quarters of children who will have low language at 11 years

Gasparini, L., Shepherd, D. A., Bavin, E. L., Eadie, P., Reilly, S., Morgan, A. T., & Wake, M. (2023). Using machine-learning methods to identify early-life predictors of 11- year language outcome. Journal of Child Psychology & Psychiatry, 68(8), 1242-1252. https://doi.org/10.1111/jcpp.13733

This summary has a CC BY-NC-SA license.

Language score at 11 years

Low

High

73%

77%

75%

85%

Accuracy of 2-year-old survey

Accuracy of 3-year-old survey

Learn more here: https://doi.org/10.1111/jcpp.13733 or email: gasparini.lorett@gmail.com

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Plain Language Summaries for a wide audience

Available here: https://osf.io/ydkw9/
Images, colour and white space
Readability statistics
Integrating tips from various sources [1-4]
How to create images [2,5]
How to create an audio and video summary
Sharing on social media
Share with advocacy groups

[1] Marsden et al. (2018), [2] Changepeople.org (2021), [3] Federal Plain Language Guidelines (2011), [4] National Adult Literacy Agency (2008), [5] Ibrahim (2018)

Guidelines available here: https://osf.io/ydkw9/; Email me: loretta.gasparini@mcri.edu.au

Murdoch Children’s Research Institute 2023

And finally, this written summary and these visuals can be used to create a 5-minute video summary of your research. You can just use the written summary as a script, and use your 4 images as the visuals in your video. And you can just record yourself reading out the written summary to create an audio-only version. This means you can share your audio and video summary alongside your written summary, so people can consume it in the format they prefer.

The guidelines also provide some tips on sharing the summaries on social media, your research team’s website or your project repository.

Personally, I have worked with the Engage with DLD (E-DLD) advocacy group to establish a process where researchers can share their summaries on their platform, and other advocacy groups could also link in and share the summaries. So if you do create PLS you can use various strategies to make sure that they’re reaching the audiences you want

Manuscript under review

Applicability to other communication and reading disorders. Want them to be accessible for all, although we have created them with the DLD community in mind

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Shaun Ziegenfusz and Natalie Turner from The DLD Project
Emily Jackson, Suze Leitão, Michelle St Clair from E-DLD
Shelby Annison, Rouzana Komesidou, Karla McGregor
My supervisors Angela Morgan, Melissa Wake and Daisy Shepherd
LG is supported by an Australian Government Research Training Program (RTP) Scholarship and MCRI PhD Top Up Scholarship

Guidelines available here: https://osf.io/ydkw9/; Email me: loretta.gasparini@mcri.edu.au

Acknowledgements

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Thank you

Guidelines available here: https://osf.io/ydkw9/

Email me for the slides and references: loretta.gasparini@mcri.edu.au

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References

Changepeople.org. (2021). How To Make Information Accessible: A guide to producing easy read documents. www.changepeople.org. https://www.changepeople.org/getmedia/923a6399-c13f-418c-bb29-051413f7e3a3/How-to-make-info-accessible-guide-2016-Final
Douglas, N. F., & Burshnic, V. L. (2019). Implementation Science: Tackling the Research to Practice Gap in Communication Sciences and Disorders. Perspectives of the ASHA Special Interest Groups, 4(1), 3–7. https://doi.org/10.1044/2018_PERS-ST-2018-0000
Federal Plain Language Guidelines. (2011). Plainlanguage.gov. https://www.plainlanguage.gov/media/FederalPLGuidelines.pdf
Hinckley, J., & El-Khouri, C. (2023). Why and how to publish aphasia-friendly research summaries. Journal of Communication Disorders, 104, 106338. https://doi.org/10.1016/j.jcomdis.2023.106338
Ibrahim, A. M. (Ed.). (2018). Use of a visual abstract to disseminate scientific research. https://www.surgeryredesign.com/. https://static1.squarespace.com/static/5854aaa044024321a353bb0d/t/5a527aa89140b76bbfb2028a/1515354827682/VisualAbstract_Primer_v4_1.pdf
Komesidou, R., & Hogan, T. P. (2022). A Generic Implementation Framework for School-based Research and Practice. OSF Preprints. https://doi.org/10.31219/osf.io/6zpq7
Marsden, E., Alferink, I., Andringa, S., Bolibaugh, C., Collins, L., Jackson, C., Kasprowicz, R., O’Reilly, D., & Plonsky, L. (2018). Open Accessible Summaries in Language Studies (OASIS) [Database]. https://www.oasis-database.org
Morison, L. D., Kennis, M. G. P., Rots, D., Bouman, A., Kummeling, J., Palmer, E., Vogel, A. P., Liegeois, F., Brignell, A., Srivastava, S., Frazier, Z., Milnes, D., Goel, H., Amor, D. J., Scheffer, I. E., Kleefstra, T., & Morgan, A. T. (2024). Expanding the phenotype of Kleefstra syndrome: Speech, language and cognition in 103 individuals. Journal of Medical Genetics, jmg-2023-109702. https://doi.org/10.1136/jmg-2023-109702
McGregor, K. K. (2020). How We Fail Children With Developmental Language Disorder. Language, Speech, and Hearing Services in Schools, 51(4), 981–992. https://doi.org/10.1044/2020_LSHSS-20-00003
National Adult Literacy Agency. (2008). A plain English checklist for documents. National Adult Literacy Agency. https://www.nala.ie/publications/a-plain-english-checklist-for-documents/
Slattery, P., ..., & Bragge, P. (2020). Research co-design in health: A rapid overview of reviews. Health Research Policy and Systems, 18(1), 17.
St Clair, M. C., Horsham, J., Lloyd-Esenkaya, V., Jackson, E., Gibson, J., Leitão, S., & Botting, N. (2023). The Engage with Developmental Language Disorder (E-DLD) project: Cohort profile. International Journal of Language & Communication Disorders, 58(3), 929–943. https://doi.org/10.1111/1460-6984.12835

Murdoch Children’s Research Institute 2023