iDEM interview with Inspire Malta- Representation in research processes.

Accessibility of information, while imperative, is not relevant only in regards to democratic processes, many public services and processes use complex texts to share important information. Medical professionals or local and national authorities often communicate with the population through long texts with complex language. Inspire Malta – and their head of research, Dr. Stefanie Turk – joined iDEM to foster the right of information for people with disabilities in their country. To make information more accessible through language simplification tools (such as the iDEM App) and ensure they have a real and sustainable impact on the population, the people who will benefit most from these tools must be involved throughout the research and development processes. To this end, iDEM will carry out four use cases with the App’s final users. 

In this interview, Dr. Stefanie Turk explains what the use case in Malta will look like. She also goes so far as to teach us a little about how people read and how this information will be used in iDEM. 

A brief introduction to Dr. Stefanie Turk and Inspire Malta

Dr. Stefanie Turk is the head of the research department, as well as research and innovation manager, at Inspire Malta. Inspire is the country’s leading NGO working for the rights of people with disabilities. Every person with a disability in Malta is Inspire’s service user and the organisation’s aim is to make their lives better.

Inspire became an iDEM partner at the start of 2025. Dr. Turk explains that they were interested in joining the project because they recognised the need of their service users for more accessible information. According to her, crucial information released by government agencies or medical professionals is typically presented in long, text-based formats with complex vocabulary. 

Inspire joined the iDEM project as a way to support the Maltese government in making their communications more accessible.

Dr. Turk is a linguist and neuroscientist, as such she is taking point in iDEM’s Use Case 4 in Malta. What is the objective of this use case?

While the first three use cases focus on the deliberative aspect of iDEM, the one held in Malta focuses on the experimental side of the project. Inspire will use a series of research techniques, such as eye tracking devices, to collect data to improve the text simplification tool. The aim is to include iDEM’s final beneficiaries in the creation of the app to ensure that the project truly caters to the needs of the people experiencing language barriers. 

How will the use case be carried out? 

Inspire will include their service users in the design of the use case. According to Dr. Turk, experimental work is sometimes very artificial and not very relatable to the participants. This use case will be preceded by focus groups made up of persons with lived experience of language barriers, professionals who work with persons with lived experience, as well as their guardians and families. 

The participants will choose the materials for the use case, namely the texts they feel are more relevant to their day to day lives. They will also try the eye tracking machines, so they can give feedback on how to design the use case in a way that fits their needs and what they want to achieve. 

“I am really not a fan of doing research for people with disabilities without giving them a voice and including them.”

Were there any particular considerations or preparations taken for this use case?

Yes, holding focus groups before a use case is not always common in research projects. The focus groups will include experts with lived experience, alongside researchers, to ensure that the views of both groups are taken into account when collecting the data. It also guarantees that the project’s research has the highest ethical standards. 

The point of the focus groups is to ensure that all variables are taken into account when holding and assessing Use Case 4. For example, someone who has a high working memory capacity, or higher reading capabilities, might understand the texts better during the use case. In the focus group, participants will also let the researchers know if they would feel comfortable taking tests to check their level of these relevant skills. 

How people read

Dr. Turk explains that when we read, we might not notice that our eyes don’t glide over a text smoothly. Our eyes fixate on certain words (fixations) and then jump to other important words (saccades). When we read, we jump over the text from left to right, and over short words such as of or the. These fixations and saccades tell us a lot about how people read. The number of saccades that are needed to read a text, are indicative of a person’s reading level, or of a possible reading disorder. 

For the iDEM research, if we introduce complex words, those words are fixated on for a very long time. Dr. Turk explains that humans are very visual: 

“We look at what is currently the focus of our attention. The longer we look at the word the longer it takes for us to process it.”

The same goes for the saccades. When a person jumps back to a part of the text that has already been read (known as regressions), it means that there is a problem because something was not understood. This indicates that the text needs to be further simplified because there are words or structures that are not understandable to the reader.

So, information on how people read will be used to improve the iDEM App?

Yes, the iDEM App is based on an artificial intelligence algorithm. This means it learns by getting information from texts considered both easy and complex, understanding what words are considered complex, and simplifying the text. This information is largely based on expert opinion, not on the real reading competences of possible service users. 

iDEM wants to check that what the algorithm thinks is a difficult word is actually a difficult word according to the service users’ reading patterns. This way, researchers can also catch words that were not seen as complex by the algorithm. Dr. Turk wants to literally include the view and perspective of people experiencing language barriers due to disabilities, in the development of the app. 

Thank you Stefanie for taking the time to explain how iDEM’s Use Case in Malta will work!