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Accessible Research Toolkit

Header for the page, including text: The Co-Producing Accessible Legal Information (COALITION) Project with logos of project partners: People First, University of Birmingham, University of Leeds, Wilsons Solicitors.

Welcome to our Accessible Research Toolkit. The resources you can access through this page were produced through the Co-Producing Accessible Legal Information (COALITION) Project, funded by the University of Birmingham QR Participatory Research Fund. You can find out more about the project on our Research Findings page.

Contents:

Accessible Research

We are passionate about the importance of making research accessible. Our Accessible Research Toolkit was created through the COALITION Project, a coproduction research project funded by the University of Birmingham. The COALITION project aimed to create a model for ethical co-production, and develop easy read templates for legal service providers to use to create accessible legal information.

We have made this toolkit freely available to download from our license platform so as many researchers as possible can make their research inclusive of and accessible to disabled people who use easy read information. We hope to add to the resources available in the future.

The toolkit includes easy read templates of participant information sheets and consent forms that can be freely used and adapted.

Doing Coproduction: A guide for researchers

We have created a short guide to do coproduction research, building on our experiences in the COALITION project.

Download CoProduction Research: A guide for researchers

CoProduction Research: A Guide for Researchers

In this guide, we reflect on our experience of doing accessible coproduction research and offer guidance and suggestions for researchers thinking about doing coproduction with people with learning disabilities or other cognitive impairments.

What is Easy Read Information?

Easy Read information is a way of making written information easier to understand. It has been developed with input from people with learning disabilities. Easy Read uses very simple written language accompanied by descriptive images.

Easy Read

Easy Read is increasingly being used to help the 1.5 million people with a learning disability in the UK access written information. It is also helpful for people who speak English as a second language, those who have difficulty reading or writing for other reasons, or who have memory problems, neurodegenerative conditions or brain injuries.

Easy read information does not try to cover every detail that would be in a longer written document. Instead, it focuses on the key concepts and ideas that need to be understood by the person reading the information. The skill in developing easy read information is to synthesise the information without losing any of the crucial points.

Easy read formats must not be confused with the need for plain language written information. All participant information for research participants, especially for non-specialists, should be written as clearly as possible using plain language.

Why should you provide research information in easy read formats?

If you expect to include people with learning disabilities, low literacy or other accessible information needs as participants in your research, then you should use easy read research materials to support their participation.

An image of the first page of an easy read coproduction research participant information sheet.

Support with making decisions is a core principle of the Mental Capacity Act 2005 and helps to ensure disabled people have a say in research involving them. Accessible information can also be a reasonable adjustment required by the Equality Act 2010.

Deciding what the key concepts and ideas are that participants need to understand and consent to when taking part in a research project is an intrinsic part of undertaking ethical social research. Similar skills are required when developing accessible information. Whilst it can be much more difficult to express ideas in very simple ways than it is to use more complicated language, using accessible language can ensure that all participants know what you will do with the personal data you collect during a research project.

Investing the time in developing inclusive research materials like those in our toolkit can also increase the potential participant pool for research. This can lead to more inclusive research methods and results that are more meaningful, more representative or more generalisable to different groups in society.

In summary:

  • Everyone who participates in research must be provided with information in a format they can understand.
  • Using easy read information can help people with learning disabilities to provide informed consent to participate in research, enabling their voices and perspectives to be included in research.
  • Using accessible research information can also help ensure that researchers comply with the Mental Capacity Act 2005.

Researcher Duties under the Mental Capacity Act 2005

This toolkit was developed from research that took place in England. The Mental Capacity Act 2005 (MCA) regulates research involving people with impairments that impact on their ability to participate in research in England and Wales. All researchers undertaking research involving people with impaired mental capacity have a statutory duty to read and be familiar with the Mental Capacity Act Code of Practice, particularly the chapter relating to research.  

It is unlawful to include people who lack capacity to consent to participate in research in England and Wales without following the requirements of the MCA. Ensuring compliance with these rules is essential for researchers who want to include people with capacity impairments as research participants.

The MCA rests on five principles:

  1. A person must be assumed to have capacity unless it is established that he lacks capacity.
  2. A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.
  3. A person is not to be treated as unable to make a decision merely because he makes an unwise decision.
  4. An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.
  5. Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.

The MCA provides for inclusion of people who lack capacity to consent to participate in research.  However, easy read research materials can help researchers to provide the support required by the MCA to include people with learning disabilities in research, and to make their own decisions about whether or not to take part in research, rather than use the consultee processes set out under ss.30-34.

Under ss 30-34 of the MCA, research involving people who lack capacity to consent to participate must follow the rules set out in the Act about consultees, and be authorised by an appropriate body (a statutory research ethics committee). You can find out more about that process on the Health Research Authority website. There are restrictive rules around when research involving people who lack capacity can be authorised under the MCA. Only research that is linked to an impairing condition that affects the person who lacks capacity, or the care or treatment of that condition can be authorised under the MCA. There also need to be reasonable grounds to believe that the research cannot be conducted as effectively without including people who lack capacity. There are strict rules about people who lose capacity to participate in research during a research project.

Different rules apply in Scotland and Northern Ireland, as well as in other jurisdictions around the world. As a researcher you have a duty to comply with the law in the jurisdiction you are working in. The Health Research Authority has information for researchers about research involving adults who are unable to consent for themselves in each UK jurisdiction.

Further resources for academic researchers:

How do I access the Accessible Research Toolkit templates?

You can access the toolkit through the MICRA gateway platform.

The toolkit is completely free, and distributed under a CC-BY license. We only ask that you register your interest in the toolkit. We would also like you to provide some contact information so that we can collect feedback about your use of the toolkit, and ask that you acknowledge your use of our toolkit, to help others find it.

What does the toolkit include?

  1. Guidance on how to produce your own easy read participant information and consent forms, tailored to your research project.
  2. Copies of the participant information sheet and consent form for the ‘Co-Producing Accessible Legal Information’ Project.
  3. Example templates for you to adapt to use in your own research.

How do I acknowledge my use of the toolkit?

Please include the following statement on any documents you create using our templates:

“These easy read materials were adapted from the Accessible Research Toolkit available at https://legalcapacity.org.uk/accessible-research-toolkit/”

Please include a citation to the toolkit in any description of your research ethics process in publications:

Rosie Harding, Amanda Keeling, Philipa Bragman, Ketevan Khomeriki, Andrew Lee, Sophie O’Connell and Dhanishka Seneviratne (2024) Accessible Research Toolkit available at https://legalcapacity.org.uk/accessible-research-toolkit/

Who can I contact for more information about the toolkit?

You can contact the COALITION Project research team by emailing Professor Rosie Harding at r.j.harding@bham.ac.uk.

Where can I get help with developing Easy Read information?

The easy read information we share here was produced in collaboration with People First Ltd, and their Empower Enterprise team.

There are many suppliers of easy read translation services around the UK. Many self-advocacy groups offer easy read translation services. We encourage you to reach out to local suppliers to help you to develop relationships with small providers working in your area. Always ensure that your easy read materials are tested with users.

National suppliers of easy read translation services and image banks to support easy read development include:

If you would like us to add a link to your easy read translation service here, please Contact Us.