Learning disability and Autism Research ACCESS (LARA)
- Group summary: The LARA group is a national group that works together to improve inclusion of people with learning disabilities and autistic people in health and social care research.
About us
We are the Learning disability and autism Research Access (LARA) group. You can find out more about us below.
Words we use
We use ‘people with learning disabilities’ and ‘autistic people’ on our webpage. Our group prefers these words overall.
Some people prefer to use different words about learning disabilities and autism. It is up to each person how they want to describe themselves.
Background to our group
People with learning disabilities and autistic people are often unfairly left out of research. This means research may lead to changes in health and social care services that do not help people with learning disabilities and autistic people.
There are good examples of research that has included people with learning disabilities and autistic people. However, these examples and guidance are in lots of different places. This means researchers may not know about them.
Different teams across the country may be working on the same challenges without learning from each other. It can also be hard for research teams to follow guidance. This is often due to problems like not having enough training.
To help address these issues, we set up the LARA group. Our group brings together people with lots of different experiences. This allows us to work together and learn from each other.
Our aims
Our overall aim is to improve inclusion of people with learning disabilities and autistic people in health and social care research. This includes all health and social care research. It is not just about learning disabilities and autism research.
Click the box below to learn more about our aims.
- To promote inclusion of people with learning disabilities and autistic people as research participants. For example, by sharing studies that have included people with learning disabilities and autistic people.
- To remove access barriers that stop people with learning disabilities and autistic people taking part in research studies. For example, by sharing guidance on how to make information more accessible. This could be through using plain English and Easy Read.
- To increase awareness of what people with learning disabilities and autistic people can do as researchers themselves. For example, by sharing examples of how people have led and been involved in research.
- To support people with and without lived experience of learning disabilities and autism to work together and co-produce research. For example, by developing top tips on working with people with learning disabilities and autistic people as research team members.
What we do
To help achieve our aims, we hold online meetings every four months. We also carry out other activities, such as sharing information on this webpage.
All our work focuses on:
- Learning new things.
- Coming up with ideas.
- Sharing good ways of doing things.
- Sharing helpful training.
- Building connections between different people and groups.
Who we are
The LARA group is committed to improving inclusion of people with learning disabilities and autistic people in research. Our members bring lots of different experiences of learning disabilities and autism.
Our group is hosted by the University of Leeds.
Our team includes:
- LARA Group Lead: Anna Anderson, University of Leeds
- Meeting Co-Lead: Janis
- Accessible Information Lead: Max Clark, Thinklusive
- Communications and Editorial Lead: Amrit Chauhan, University of Leeds
- Membership and Engagement Lead: Amy M Russell, University of Leeds
Thinklusive develop our key Easy Read documents and other accessible information.
We used Microsoft Copilot to help develop our logo.
How to join
Our group is open to everyone.
If you would like to join, please:
- Click the boxes below to read our privacy notice and group rules.
- Fill in the LARA group sign-up form or email Anna Anderson via A.Anderson@leeds.ac.uk.
If you would like to join the LARA group, please read the text below.
About this privacy notice
This privacy notice is for the Learning disability and Autism Research Access (LARA) group.
The University of Leeds is the Data Controller for the LARA group. That means it is responsible for keeping your information safe and secure.
The University of Leeds is registered with the Information Commissioner’s Office. Its registration number is Z553814X.
‘We’ and ‘our’ in this privacy notice means the University of Leeds.
How we use personal information
If you join the LARA group, we will use your personal information. The personal information will be your name and email address. We will collect the personal information directly from you.
We will use your personal information to:
- Share information related to the LARA group with you.
- Invite you to LARA group meetings and other activities.
Our legal basis for using your personal information is ‘consent’. Consent means that you agree for us to use your personal information.
We will ask you to give consent by filling in the sign-up form or emailing Anna Anderson via A.Anderson@leeds.ac.uk.
We will only use your personal information if you agree to that.
How we keep personal information secure
We will store your personal information on secure University of Leeds computer systems. We will follow the University of Leeds Data Protection Code of Practice.
We will keep your personal information as long as the LARA group is still going. You can ask us to delete your information at any time.
Only a small number of University of Leeds staff who have permission will have access to your personal information. We will not share your personal information with anyone else.
The risk of your personal information being lost or accessed by people who do not have permission is low.
You will need to give consent if you want us to share your personal information for an agreed purpose. For example, if you are happy to have your email address shared with other members of the LARA group.
Your responsibilities
If you join the LARA group, you are responsible for:
- Following the LARA group rules. These include not sharing information about other group members unless they agree to it.
- Giving us your personal information. Please give us a work email address if you have one. You can give us a personal email address if you do not have a work one.
- Sharing your personal information during LARA group activities. For example, you are responsible for:
- Information you share in LARA group meetings. This includes the name displayed when you join a meeting online and what you type in the meeting chat
- Information you add to shared documents. This includes the name and/or email address displayed when you add a comment.
Your rights
You have the right to:
- Ask for a copy of the personal information we hold about you.
- Ask us to change the personal information we hold about you.
- Ask us to delete the personal information we hold about you.
You can find out more about your rights on the Information Commissioner's Office website.
Contact details
LARA Group Lead
Anna Anderson, Research Fellow in Qualitative Research, University of Leeds.
Email: A.Anderson@leeds.ac.uk.
Please contact Anna if you have any questions or concerns about the LARA group, or want us to change or delete the personal information we hold about you.
University of Leeds Data Protection Officer
Email: dpo@leeds.ac.uk.
Postal address: University of Leeds, Leeds LS2 9JT, UK.
Please contact the University of Leeds Data Protection Officer if you have any questions or concerns about this notice or how we are using your personal information.
Information Commissioner’s Office (ICO)
Telephone: 0303 123 1113.
Further information: ICO website.
You have a right to complain to the ICO about how we are using your personal information if you want to.
If you join the LARA group, please follow our group rules.
- Recognise all members’ strengths.
- Respect all members’ views and experiences.
- Help to meet members’ needs.
- Try to avoid using jargon and long words.
- If you need to use acronyms, explain what they mean. An acronym is a word formed from the first letters of a group of words, and is spoken as a word.
- Do not share information about other members unless they agree to it.
Useful links
Click the boxes below for some useful links.
- No research about us without us project: this project developed guidance on including people with learning disabilities in research.
- Inclusive research tools, resources and templates: this webpage has tools, resources and templates that support an inclusive research team, developed through the ‘No research about us without us’ project.
- Clinical Trials Easy Read guide: this booklet explains what ‘clinical trials’ are.
- MAPLE project: this project developed guidance on accessible patient information leaflets. Patient information leaflets help patients choose if they want to take part in research.
- Easy Read standard: this standard provides rules for creating good Easy Read.
- Autistica guidelines for good research practice: these guidelines explain how to make studies accessible and inclusive, including for autistic people.
- OPTIMISE project: this project developed recommendations on inclusive ‘consent’ in clinical trials. ‘Consent’ is where people say ‘Yes’ to taking part.
- CONSULT project: this project developed information and training on research with people who may not be able to give their own consent.
These groups include people with learning disabilities and autistic people. Their webpages have good examples of studies that have included people with learning disabilities and autistic people.
(More groups to be added).