Including people affected by type 1 diabetes in your research

People with lived experience of type 1 diabetes should be involved and invited to take part in every stage of type 1 diabetes research, from funding to implementation. This should include people from all ethnicities, ages, genders, sexual orientations and religions with a connection to type 1 diabetes.

JDRF can help type 1 diabetes researchers – whether you’re currently funded by us or not – with participation, engagement and involvement activities. Although these words sound similar, participation, engagement and involvement all mean something slightly different. Find out more about each of them below.

Encouraging people to participate in your research

What is research participation?

Participation is where people are recruited to take part in a research study. People with and without type 1 can participate in type 1 diabetes research by:

• joining clinical trials
• giving biological samples (such as blood or cells) or data (by completing surveys)
• taking part in interviews or participating in focus groups

Why do researchers need participants with experience of type 1 diabetes?

When people with lived experience participate in research, it allows researchers to understand type 1 diabetes better. Participating in clinical trials testing new drugs, equipment or technologies enables researchers to make new discoveries and develop new treatments to help alleviate the burden of type 1 diabetes.

How can JDRF help with participation in your research?

For help with participation and recruiting people for your studies, please email the following documents to our research team at researchcommunications@jdrf.org.uk:

• The study protocol (that you submitted to gain ethical approval)
• The draft participant information sheet (as submitted to gain ethical approval or as approved)
• Any draft survey/questionnaire in Word/PDF format (if applicable)
• Research Ethics Committee approval (as soon as it is obtained)
• The number of participants you are looking to recruit
• The deadline to recruit participants by
• A short text to advertise your study (this should be in lay language with a link to your study/survey)
• An engaging image for us to use on our social media channels

Once we have reviewed these documents we will confirm if we can promote your study. All approved studies are listed on our Take part in research page.

If we approve your request, we ask that feedback is provided to your participants and that the results of your study are shared with JDRF. We also request acknowledgement of JDRF’s support. Please refer to us as ‘JDRF, the type 1 diabetes research charity’.

Involving people with experience of type 1 diabetes in your research

What is research involvement?

Involvement is where people who have lived experience of a condition are actively engaged in research projects. For type 1 diabetes, this means research conducted with or by people who are diagnosed with type 1 or who have a strong connection to the condition.

People with experience of type 1 can be involved in all stages of research by:

• Being joint grant holders or co-applicants on a research project
• Identifying research priorities
• Being members of a project advisory or steering group
• Commenting and developing research materials such as participant information leaflets, posters and webpages
• Interviewing research participants
• Supporting researchers to present their project and share their results
• Helping to ensure research is relevant to people affected by type 1 diabetes

Why should you involve people with type 1 in research?

Involving people with lived experience of type 1 in research benefits both researchers and people with type 1 by improving the quality, impact and relevance of the research.

Involving people with type 1 diabetes in your research:

• Provides a different perspective on your project
• Ensures accountability for public or charity funding
• Empowers people affected by type 1 diabetes
• Provides a route to influence changes and improvements in issues that matter most to people with type 1
• Is compulsory when applying for NIHR funding and is often recognised as essential by other major research funders

Involvement of people with lived experience in research must be meaningful to be beneficial.

How can JDRF help with involvement in your research?

It’s helpful to start by asking yourself why you are involving people with experience of type 1 in your research. Remember that it is most helpful to talk to people with lived experience as early as possible in your project because their suggestions may change your initial plans.

For help with involvement, please provide the following information to our research team:

• A summary of your project
• Who you would like to involve (their skills and attributes)
• How many individuals you would like to involve
• What they will be asked to do
• What the people involved will get from the experience
• The timeline for the opportunity (duration, frequency, time commitment)
• Where the project is taking place and/or if it’s possible to join virtually
• Details of any training or support you intend to provide

Please cover these points in a maximum of two pages and email the document to us at researchcommunications@jdrf.org.uk

More resources to help you involve people in your research

To get even more people involved in your research, you can share the involvement opportunity on this NIHR forum.

INVOLVE provides an introduction for researchers new to public involvement. Through their website you can access a library of helpful documents with topics such as ensuring diversity and inclusion in who you involve in your research.

Some of INVOLVE’s most relevant pdfs are linked below:

• Public Involvement in Clinical Trials
• Briefing Notes for Researchers
• Strategies for Diversity and Inclusion
• Public Involvement in Systematic Reviews

The NIHR Research Design Service (RDS) has also produced a brief guide to public involvement in funding applications

A practical guide about how to involve patients and the public in laboratory-based research includes a section on planning involvement and was developed in partnership with patients and researchers.

Getting the public to engage with your research

What is research engagement?

Engagement is where information about research and scientific findings is shared beyond the research community to people with type 1 diabetes and the wider public.

There are many ways to communicate your research to people outside the lab. One way is through events such as science festivals, where you can share your research with the public. You could also organise an open day at your lab and invite members of the public or specific groups (such as people with a connection to type 1) to learn about your research.

Alternatively, you could share your research through audio, visual and written content in the media. This can be broadcast on radio programmes, television, magazines, newspapers, websites and social media channels. You can either share these on your own media channels or team up with others (like JDRF) to reach a wider audience.

What is the benefit of engaging people in research?

Sharing the findings of your research helps to raise awareness of type 1 diabetes and develop a better understanding of the challenges people living with type 1 diabetes face. It also helps make science less exclusive so that everyone can learn about it and benefit from it.

Engaging people living with type 1 diabetes teaches you what is important to those affected by the condition. It is also a great opportunity to remember why your work is important and potentially thank those who fundraise to support your research.

How can JDRF help you with research engagement?

Our UK content team is always keen to hear about type 1 diabetes research, progress and exciting breakthroughs. As a fundraising charity, we encourage researchers to communicate and discuss their work with supporters.

We run both virtual and in-person events for our supporters throughout the year and we love having scientists present their research at the events. Our supporters also enjoy reading interviews with our researchers in our publications and on our website. We may even be able to help you publicise your research with press releases, news stories and social media posts.

For help boosting engagement with your research in any of these ways, please get in touch with us at researchcommunications@jdrf.org.uk

External resources to help with involvement, participation, and engagement

It’s important to make sure the language you use is clear and understandable when writing anything aimed at the public. Several online and downloadable tools exist to help you evaluate the readability of your text, such as Hemingway Editor

When describing any condition and those who live with it, it’s important to also use sensitive language that doesn’t hold negative associations. One useful document to help you write about diabetes is language matters – language and diabetes.

Trial Forge’s Include Ethnicity Framework has questions intended to prompt researchers to think about who should be involved as participants, how to facilitate their involvement as much as possible, and what challenges you may face.

This NIHR document outlines good practice for recruitment and involvement.

The Understanding Patient Data website has examples of great engagement activities, tips and resources related to public engagement focusing on the way health data is used.

The UK Standards for Public Involvement are a description of what good public involvement looks like. They provide guidance and reassurance for users working towards achieving their own best practice.