Building the Aphasia Research Library together.

The researchers wanted to know what people with aphasia want in a research summary. They also wanted to work with people with aphasia to design an easy-to-read summary.

This was a co-design study. Researchers and people with aphasia worked together as partners. The study used an online meeting, a survey and design workshops.

About 30 people went to an online meeting. Everyone agreed: easy research summaries are needed. They wanted all summaries in one place online.

70 people with aphasia did a survey. The most important things to know were:

• what the researchers wanted to find out
• the results
• what the research means for people with aphasia

Four people helped design the solution. They said one design cannot suit everyone. So the team built a free website: the Aphasia Research Library.

On the website you can:

• change the text size, spacing and colours
• have the text read out loud
• see the meaning of hard words
• choose which parts of a summary to read

Research is often hard to find and hard to read. Many research articles cost money to read. Plain language summaries help some people. But they are still hard for many people with aphasia. People with aphasia have a right to know about research.

There is now a free website with aphasia-friendly research summaries. You can search for research on topics you care about. You can set up the website to suit you. You can share summaries with family, friends and therapists.

Researchers can use the website to share their work.

The study also shows that people with aphasia can change research for the better.

The study had 4 steps.

1. Discover: An online meeting with people with aphasia and family members. People talked in small groups.
2. Define: An online survey. People sorted 21 topics into “must have”, “nice to have” or “no need to have”.
3. Develop: Three workshops with people with aphasia. They looked at early designs and gave ideas.
4. Deliver: The team built the website step by step. They made changes based on the feedback.

This study did not test a treatment.

The Aphasia Research Library is free. Go to www.aphasialibrary.org. You do not need an account to read or search.

Researchers need a free account to add summaries.

Aphasia is a language problem. It can affect talking, understanding, reading and writing. It is often caused by a stroke.

A plain language summary explains research in everyday words. Aphasia-friendly writing makes it easier again. It uses short sentences, bold key words, larger text, white space and pictures. People with aphasia prefer this kind of writing. It helps them understand.

Before this study, there was no single place to find aphasia-friendly research summaries.

There were no known risks. Some people found the survey hard or tiring.

Online meeting: Anyone who joined through the 2 aphasia groups that ran it.

Survey: Adults who said they had aphasia, from any cause.

Workshops: People with aphasia and family members invited by the Queensland Aphasia Research Centre.

Online meeting: About 30 people with aphasia and family members. They were from Australia and the United Kingdom.

Survey: 70 people with aphasia.

• They lived in 15 countries and spoke 11 languages.
• Most lived in Australia or the United Kingdom.
• Average age was 54 years.
• About half were women.
• 3 out of 4 had aphasia from a stroke.
• Most had lived with aphasia for more than 6 months.

Workshops: 3 people with aphasia and 1 family member.

The team used a design method called the double diamond. First, you work out what the problem is. Then you work on solutions.

People with aphasia had a say at every step. This meant they could change the plan. And they did.

The team first planned a paper template. People with aphasia said a template could not meet everyone’s needs. It could not be searched, changed or shared easily. So the plan changed to a website.

• Online meeting: September 2021
• Survey: March to June 2022
• Workshops: April to May 2023

The research was led by the Queensland Aphasia Research Centre at The University of Queensland, Brisbane, Australia.

The meeting, survey and workshops were all held online. The online meeting was run by Dyscover and Speakeasy, two aphasia groups in the United Kingdom.

The Collaboration of Aphasia Trialists paid for this research. That group gets money from the Tavistock Trust for Aphasia.

Sarah Wallace is funded by the National Health and Medical Research Council, an Australian Government research funder. Silvia Martínez Ferreiro is funded by the Spanish Government and the European Social Fund.

• Most survey answers came from Australia and the United Kingdom. The results may not apply everywhere.
• Many people started the survey but did not finish. The sorting task may have been too hard.
• The workshop group only used desktop computers. The website still needs testing on phones and tablets.
• The website is only in English, Spanish and German so far.
• The website does not yet meet every accessibility standard.
• We do not know yet if the website helps people understand research better.

• A university ethics committee approved the study.
• Everyone who did the survey or workshops gave consent.
• People with aphasia were part of the research team. Some are authors of the article.
• The team followed checklists for reporting research.
• Other researchers checked the article before it was published.
• The researchers were open about the problems with the study.

• Test how well the website works for people with aphasia.
• Add more languages.
• Use computer tools (artificial intelligence) to help write summaries.
• Find more ways to add research to the library.
• Meet the needs of people with other disabilities after stroke, such as vision loss.
• Plan how to keep the website running long term.

• Aphasia Research Library: www.aphasialibrary.org
• Contact: Associate Professor Sarah Wallace, s.wallace3@uq.edu.au