Taking part in research means that you’re helping researchers to better understand diabetes, your experiences living with it, and the experiences of your communities. You can help researchers see how their new ideas could help treat diabetes, and care for people living with it.
"I was born in Sierra Leone, West Africa. I have been diagnosed with prediabetes. I think it’s important to take part in research because I can encourage more people from my background to take part as well - by sharing my experiences." - Alhaji, participant in diabetes research
What does taking part involve?
Taking part in research could involve:
- sharing your experiences about living with diabetes by answering questions in short, often anonymous surveys, or by connecting with researchers in an interview, or focus groups;
- occasionally visiting researchers in-person to help them see what’s happening inside your body. This may involve researchers taking some samples. They’ll support you all the way, putting your health and safety first;
- consenting to share your health data so researchers can observe large groups of people to look for patterns or factors that affect health - both in positive and negative ways.
Taking part could also involves clinical trials.
What are clinical trials?
Clinical trials are planned studies which involve volunteers trying out new tech or treatments. These treatments could be medications or ways to change care. It’s all about seeing how effective treatments are for people living with diabetes.
Clinical trials also help researchers understand the safety of treatments, whilst still prioritising yours. Researchers monitor the health of people in their studies closely.
In some clinical trials, you might not receive the new treatment at all. This is because a group of people may be given a dummy treatment. Researchers compare findings from the dummy treatment group with findings from people who had the actual treatment - to see if it’s really working. You won’t know if you’re given the dummy or not to make the research fair.
Researchers will make sure that any in-person visits are arranged at a time that best suits you.
And before you take part, they’ll give you lots of information on the study to make sure you feel comfortable about what’s involved.
You can ask as many questions as you like, and you can decide to withdraw from the study at any time.
Some studies have guidelines for finding people to take part, like the type of diabetes you’re living with, or the treatment you’re currently using. But with so many research opportunities out there, you’re likely to find one that’s open to you.
Why do researchers need you?
Everyone affected by diabetes can take part in research – whether you’re living with diabetes, at risk, a family member or friend, or a healthcare professional treating the condition.
Research is all about learning more.
Findings from research can be transformed into something that helps people with diabetes in their daily lives. That’s why we have the diabetes medicines we use today.
To fully understand diabetes, researchers need to hear from people affected by it. Your experiences, challenges, and insights are incredibly valuable.
And it’s important that research participants come from many different backgrounds.
Today’s diabetes treatments and care have typically been developed using data from White European populations. This means that research findings may not be relevant to or helpful for the communities most affected by diabetes.
For example, people from South Asian and Black backgrounds are three times more likely to be diagnosed with type 2 diabetes under 40 years than other groups. Black African and Black Caribbean individuals with type 1 diabetes are 39% more likely to develop diabetes eye damage compared to other ethnic groups.
We can work together to cultivate more inclusive and impactful diabetes research, so we can turn the tide on these stats, and make sure research findings are right for everyone living with diabetes.
If you are from a South Asian, Black African, or Black Caribbean background, you can help make sure that diabetes research findings meet the needs of your communities. Your participation in research, like clinical trials, is a vital step on the way to bringing the positive impact of diabetes research to life for all people at risk of or living with the condition.
Diabetes UK want to say a big thank you for the time and effort you’ll give.
Find an opportunity to take part in research.
What are the benefits of taking part in research?
- You’d be learning about your own health and diabetes, whilst helping others to learn too - and inspiring them to take part in research that could benefit the health of their communities.
- Most studies appreciate that it’s all about your time and effort. They may provide incentives, like covering travel costs or giving you a voucher as a thank you.
- You could be given pioneering new treatments - before they become widely available through clinical trials. You’ll also get extra support and regular check-ins with healthcare experts.
How do researchers put your health and safety first?
Before you decide to take part in any research, the researchers will go over any possible risks with you. All studies go through checks beforehand to make sure they are ethical, and that the benefits are more than the risks.
But there are a few things to keep in mind.
Researchers may not know exactly how well new treatments will work, or they might work differently than planned. It’s part of the research process to figure this out, but it could mean the treatment doesn’t work for you.
It could also mean you experience side effects. These can be mild, like nausea or rashes, but there’s a small chance they could be more serious. You will always be closely monitored by researchers to keep you safe.
Also, talking about or answering questions on your own experiences of diabetes could bring up difficult emotions or memories. It’s important to let the researchers know if anything becomes overwhelming, and they can take steps to help you. You can also withdraw from studies at any time.
Each study has a point of contact, which you’ll see on its web page. This is usually the researcher. But if you have any questions or concerns, we’re here too. You can email researchcomms@diabetes.org.uk.
