Inclusive Communication in PPI

Written by Izy Utley - Speech and Language Therapist, Research Fellow and Doctoral Research Student.

Up to 14 million people in the UK (20% of the population) will experience communication difficulty at some point in their lives (RCSLT). Despite the increased emphasis from funders to involved the public in research, many people with communication differences or difficulties feel excluded.  

Anyone can experience communication differences or difficulties in their life. People may have differences or difficulties expressing themselves and/or in understanding other people’s communication.

Inclusive communication recognises that human beings use many ways of understanding and expressing themselves (RCSLT 2016). It also encourages, supports and enables people to use whatever ways of understanding and expressing themselves which they find easiest. Inclusive communication relates to all modes of communication: face to face, written information, online information and the telephone or video conferencing.

When we only include people in a PPI group who can communicate verbally in a group setting, we potentially miss accessing many participants who find it more difficult to share their views. Good communication for everyone reduces the risk of exclusion and inequalities.

This is an area of interest to me as a doctoral researcher and a speech and language therapist. As a non-autistic person it was essential for me to have autistic advisors with and without a learning disability involved in designing the research and helping me understand how autistic people might experience a research interview. In my current doctoral research I have been supported by PPI advisors who have expressed how they would like to communicate best, for example asynchronously, through the chat function in a meeting or in a 1:1 setting.

Recruiting people with communication differences or difficulties can be a challenge. I found in my own doctoral research that I needed to use different approaches to find people who may not access social media or may find written words on posters difficult to understand. Using other methods such as linking in with third sector organisations or involving speech and language therapists in sharing information can be useful.

Other tips:

·         Using Plain English or to include people with a learning disability offering an Easy Read option.

·         Making information visual, flow diagrams, charts, pictures can all help people understand information.

·         Consider other ways of involving people in PPI for example 1:1, via email or meeting before a group.

·         Ask people with communication differences and difficulties what might help them to take part, people have different preferences and may know what they need to access information and express themselves.

·         If having meetings make sure the agenda and any information is sent in advance so that people have time to understand the information and prepare any feedback.

Further ideas about inclusion in meetings can be found here: https://www.youtube.com/watch?v=_IAT8oaEIZQ - Dr Anna Volkmer, Including the voices of people with Dementia or here: https://nait.scot/wp-content/uploads/2025/02/NAIT-Guide-to-Co-production-with-Neurodivergent-Communities.pdf - National Autism Implementation Team Co-Production with Neurodivergent Communities.

·         Contact speech and language therapists, there may be a department at your university. Clinicians may be looking for a way to become more involved in research, and this is an area where SLTs have skills and ideas.

·         In the UK the Royal College of Speech and Language therapists alongside other organisations have designed the Communication Access UK training which is free online training to support inclusive communication for all (https://communication-access.co.uk/).

Finally thank you to the advisors who I continue to work with. I believe that participants in my doctoral research have had a better experience due to the knowledge and advice I gained from PPI advisors.

References:

Bottomley, M.,  Bradley, J.,  Clark, L.,  Collis, B.,  Srdanovic, B. D.,  Farnsworth, V.,  Ferguson, A.,  Goodley, D., Fox, A.,  Hayden, N. K.,  Lawthom, C.,  Lawthom, R.,  Magwood, C.,  McLean, R.,  Middleton, I.,  Owen, A., Prothero, M.,  Rice, S.,  Richards, S., …  Wood, T. A. (2024).  Co-producing ethics guidelines together with people with learning disabilities. British Journal of Learning Disabilities,  52,  611–632. https://doi.org/10.1111/bld.12590

Faull, A., Rabbitte, S., Kiani, R., Jun, G.T., Kuchadia, S., Neville, H., Jobanputra, A. and Gangadharan, S. (2025), Involving and Engaging People With Learning Disabilities in the DECODE* Research Project (*Data-Driven Machine-Learning Aided Stratification and Management of Multiple Long-Term Conditions in Adults With Intellectual Disabilities). J Policy Pract Intellect Disabil, 22: e70004. https://doi.org/10.1111/jppi.70004

Money D., et al. (2016)Inclusive Communication and the Role of Speech and Language TherapyRoyal College of Speech and Language Therapists Position Paper. RCSLT: London 

Palmer R, Paterson G. To what extent can people with communication difficulties contribute to health research? Nurse Res. 2013 Jan;20(3):12-6. doi: 10.7748/nr2013.01.20.3.12.c9491. PMID: 23346773.