Taking part in type 1 diabetes research: Miles’s story

Miles Keeping, 56, from Brill, Buckinghamshire, is taking part in the ADDRESS-2 study for people diagnosed with type 1 diabetes in the previous 6 months, through the Oxford Centre for Diabetes, Endocrinology and Metabolism (OCDEM) at the Churchill Hospital, Oxford.

The study, led by Imperial College London and open throughout the UK, involves people agreeing to be contacted about diabetes research studies they may be eligible for. People can also choose to provide a blood sample to be used anonymously to look at patterns in who gets diabetes and how it affects them, or to match people to studies.

How did you come to take part in the trial?

“I was approached by diabetes specialist nurses who asked me if I would be prepared to participate in research studies. This was whilst I was on a dose adjustment for normal eating, or DAFNE, course at OCDEM, which provides information about administering the right amount of insulin for the amount of carbohydrate you eat. I became really interested in how research was focused on identifying causes, treatments and possible cures for diabetes.

“Having type 1 diabetes is something which I can’t turn off, and no matter how well I deal with it, it must be managed every day. This means that I have to consider the impact of everything I eat and drink, and what sort of exercise I do and when I do it. I also need to ensure I have supplies of insulin and carbohydrates with me at all times, as well as being connected to my blood glucose sensor via my phone. It also means that I have to know that family and friends are aware of my condition and of when I may need help from them. I dislike being so dependent upon drugs and technology, and although I appreciate that they want to help, I wish I didn't have to impose on other people, actively or passively, all of the time.”

Why did you choose to take part in the trial?

“As a newly diagnosed type 1 diabetic, I am hungry for information. The research being undertaken into causes, treatments and even potential cures is very wide-ranging and fascinating. I found I had an interest in the research, whether biochemical, technological or physical, which I think stemmed out of a natural curiosity, and an appreciation of the fact that without it, improvements in treatment are unlikely. To an extent, there is a degree of self-interest in helping research, but it would be great if I could help anyone with diabetes, even in a small way, to obtain treatment which helps to improve their lives. Who knows, I might one day be involved in research which even goes as far as to help prevent diabetes occurring!

“In order to help researchers identify whether I am a suitable subject for relevant research studies, I volunteered to be part of ADDRESS-2. This project involves gathering information about people with type 1 diabetes to help in identifying subjects for future research projects.”

What was your experience of taking part in the trial?

“ADDRESS-2 involves gathering information about people with type 1 diabetes to help identify people as appropriate participants for future research about the disease. It’s like compiling as large a database of type 1 diabetics as possible, so that gathering research subjects for future projects about possible causes, treatments and cures for diabetes is made easier. My involvement was really straightforward. Essentially, I met two of the project investigators who also work at my usual diabetes clinic, and they asked me a few questions about my medical background and recent history with diabetes. I was asked questions about some of my family’s medical history and whether any relations might also be interested in being involved in research projects as well. Apart from that, I had my blood pressure, height and weight checked - and had a really nice cup of tea!

"It has been an easy and actually really pleasant experience so far, and I really hope that I can be involved in future research projects.”

What would you say to other people about taking part in research?

“Being involved in research these days is very straightforward and a simple process. It is always made clear that involvement is entirely voluntary, and that you can withdraw at any stage if you want to do so. I would strongly recommend that as many people as possible participate in research like this because you may be involved in a project which generates real improvements in others’ lives. If I can help in any way to bring peace of mind to others with diabetes, I would consider myself very fortunate.”

Search for and sign up to be contacted about studies you could take part in on the Be Part of Research website.