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Perspectives: Diabetes Research Participation — it’s a WIN, WIN!

Lis Warren was diagnosed with type 1 diabetes in 1965. She shares her thoughts on the importance of research participation.

Some years ago I stumbled across the web site of the National Institute for Health Research (NIHR). They were looking for people with type 1 diabetes to join an advisory group to comment on a microprobe blood glucose sensing device, which sounded intriguing, so I volunteered.

Although I’d had type 1 diabetes for approaching five decades at that point, surprisingly this was the first time I’d actually thought about participating in research.

It proved to be both rewarding and fascinating. I enjoyed the blue sky thinking about how the device might look, work and make life easier for us all and I was really excited about it as I’d dreamt about having a blood glucose reading on a wristwatch for years. I also met a lively group of others with type 1 and we compared notes and laughed a lot! Our views and practical suggestions were lapped up by the researchers so it felt very rewarding to contribute and feel useful. My decades of experience living with diabetes had finally become valuable to others. Every cloud…

That CGM device is still in development (maybe I’ll actually trial it one day) but since then I’ve realised that there are incredible benefits in taking part: for doctors and research scientists, for the next generation of type 1s, the general public and of course for me. And the best bit? It’s great fun! I’ve now taken part in around 12 studies plus many one off market research events too — some of these reward you with vouchers or even cash!

Another big plus is that you may get access to a top notch medical screening or service. I did a JDRF funded neuropathy study where many sophisticated tests that simply aren’t available via the NHS were performed. I also have friends who’ve had access to expensive new technology via research. And if you do have or discover any health problems related to the study, you get the best medical advice. I love to quiz the researchers, to find out what motivates them and what inspired the studies and I always feel humbled by their responses.

For anyone struggling with their diabetes, taking part in research is my number 1 *Top Tip*. It really helps to motivate you and provides that extra impetus we all sometimes need to take care of ourselves with this relentless, demanding condition.

Most of the scientists are incredibly committed to their projects — their unbridled enthusiasm can be really infectious.

Research also supplements your diabetes education. I’ve learned far more from chatting with passionate researchers than I have reading papers or books that use all those long scientific words I don’t understand!

So… education, motivation, clinical support, fun, access to new treatments and technology. As long as you can give up some time to take part, give me one good reason why anyone shouldn’t volunteer! And remember, in the longer term research saves lives. You can too.

Here are some web sites for diabetes research participation opportunities

Lis Warren, co-chair of the Patient Experience work stream of the Diabetes Clinical Leadership Network for NHS England (London) and Service Champion volunteer for Diabetes UK. liswarren.co.uk