This course is about being a partner in a research team. It is written for a person with aphasia.
Who this is for
This is for people with aphasia who join a research programme as a partner. Not as a participant. As a member of the team.
In LUNA, that means helping to shape a programme about conversation and aphasia. Your experience is the reason you are there.
You may already know a great deal
Many people who take this role have worked for years, sat on boards or advisory panels, or taken part in research before. Some have a professional background in business, services or change.
Nothing here assumes you are starting from nothing. If a page tells you something you already know, move on. If a page treats you like a beginner, that is a fault in the page.
The one thing this course adds is the research method: why studies are built the way they are, and what the team is legally and ethically required to do.
What LUNA is
LUNA stands for Language Underpins Narrative in Aphasia. It is a programme about discourse: the way people tell stories and hold a conversation.
The programme is funded by the National Institute for Health and Care Research. It runs from March 2026 to April 2027. It is led by Professor Madeline Cruice, with Professor Lucy Dipper.
This is a development grant, not a full trial. The team is working out how LUNA could fit into NHS aphasia services. A larger trial would come later.
Four pieces of work
- Work package 1: a UK-wide survey of aphasia services.
- Work package 2: group work with people with aphasia, carers and therapists, to map what helps and what gets in the way. The team uses systems mapping: a way of drawing the whole picture on one wall or one screen.
- Work package 3: reviews of the research evidence on adapting and delivering therapy.
- Work package 4: building the plan for a future trial.
People with aphasia take part in all of this, including the mapping in work package 2 and the planning in work package 4.
Two ways people take part
As an adviser. You join meetings, read papers, and say what would work and what would not. This is a few meetings a year.
As a link worker or co-researcher. You do more. You help recruit people. You help run group sessions. You help make sense of what people said. This is paid work, with hours and a supervisor.
Both are valuable. Only the second is a paid post. Ask which one you have been invited to take on, and get the answer in writing.
Why this version is short
There is a full course on community research link working. It has nineteen pages. This version has seven.
Every page here starts with one sentence. Every page has a button that reads it aloud. The sentences are short and the text is large.
The pages
- Your role: what you do, and what you do not do.
- Aphasia and consent: making research easy to take part in, including online.
- Recruiting and talking to people: inviting people, and running a good conversation.
- Lived experience and evidence: what to do when the two disagree.
- How your contribution is judged: six things, and why there is no exam.
- What happens next: who to ask, and what to bring to a meeting.
- Where this comes from: the documents behind this course, with links.
One thing to know before you start
This was written from the published research on link workers, from the UK standards for public involvement, and from what people with aphasia say about taking part in research. It was not written with you in the room.
If a page does not fit your experience, say so. That is not a complaint. It is the correction that makes the next version better.