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Mike’s story: My experience of taking part in research

We interviewed Mike over the phone about his recent experiences taking part in Help BEAT Diabetes research.

I know you have been a Help BEAT Diabetes volunteer for quite a while, how did you get involved in the first place?

I think I saw either an email somewhere or something might have come through from Diabetes UK saying they were looking for volunteers and I just signed up, I think I filled in an email or a web form to register.

Have you any prior experience in taking part in research?

Yes, I have done quite a lot because I work at a University. On our staff internet we used to get opportunity to take part in brain scans or bone scans, a range of general medical research. I was kind of interested in the findings of their research and also just giving something back as well.

As you had prior experience of taking part in research, you would have had something to compare against when you joined Help BEAT Diabetes. Was Help BEAT Diabetes what you expected?

Yes, I think so; it is very much the same as what I have done in previous research. It was actually through a research study that I was diagnosed with diabetes. I was a healthy control subject testing a drug in males. When I had the initial medical screening that they said I needed to go to my doctors for a HbA1c test. I did and was diagnosed with type 2 diabetes.

So taking part in research has had health benefits for you? You found something out about your health sooner than you would have done if you hadn’t taken part in the research?

Yes

The way Help BEAT Diabetes works is that we send our volunteers information about the range of studies we have available. It is then entirely up to you to contact the researcher if you are interested in taking part. Have you taken part in any as a result of Help BEAT Diabetes?

Yes, I have. It was one about diabetes and hearing. It was taking part at the University where I work. It was really good because it meant I could pop over in my lunch hour.

What was it about that study that made you want to take part?

I think it was because my mum also had type 2 diabetes and lost her hearing. I don’t think that we were ever sure if it was to do with her diabetes or it was something genetic. I was interested in whether there might be a family link to it so I wanted to take part to find a bit more about it.

So that study had a lot of personal interest for you?

Yes

Have you taken part in any other studies?

No, not yet. I have received information on one that I am considering, but I have not had time to look through it yet.

Help BEAT Diabetes also send out other information which we think our volunteers might be interested in, such as diabetes related events, focus groups or opportunities to get involved with Patient and Public Involvement (PPI) groups. Is that information useful to you?

Yes, definitely. I get the monthly Balance magazine from Diabetes UK and that has things like that in as well. I quite like getting these emails because I hope that eventually I will have the time to go to some of the focus groups – unfortunately they have always clashed with work.

The way Help DIaBEATes works is to leave you to contact the researcher yourself if you want to take part in a research study. Is that something that you are comfortable doing or would you rather we contact the researcher on your behalf?

I think that I am happy with the way it is because that is the way I have always taken part in research in the past at the University. Working at the University I can imagine it is not as daunting to contact the researcher, but I can imagine that for some people this may not be the case.

Was it quite a seamless process when you contacted the researcher?

Yes, it was really easy. We had email contact and set up some appointment times etc. I think it was clear from the researcher’s emails that some people had arranged appointments and then not turned up. I received a ‘check back’ email from the researcher which was good because I realised that he was keen for me to take part and I made sure that I blocked it out in my diary.

What did taking part in that study involve?

It involved a series of hearing tests, listening to noises and pressing a button when you could hear it. I think there were about 3 or 4 tests like this that I did. Some of them were ‘active’ ones where you heard a noise and had to press a button, others were’ passive’ where a noise was played into your ear. What was really good was that the researcher explained everting so thoroughly and it was really interesting.

Was the information you received about this hearing study an accurate description of what it involved?

Yes, I think so. I had read all the information before I went. When I got there it was exactly as described and the researcher went through everything again with me . From start to finish it was made very clear.

Did you find anything out about your hearing?

I thought my hearing was quite bad, but the researcher said it was quite good!

Did you find anything else out about your health or any new knowledge as a result of taking part in that study?

No, I don’t think so, but I was made aware that diabetes can affect your hearing. We didn’t spend a lot time talking about it. For me, it will mean if I notice I am struggling hearing in the future I will be able to keep an eye on it. I think taking part has made me more aware of diabetic complications.

Why would you recommend that people get involved in research? What benefits have you found from getting involved?

For me straight off, I wouldn’t have been diagnosed with diabetes if I hadn’t taken part in a research study. Taking part in research makes you more aware of your own condition. I have done one other study with the diabetes centre. That involved taking blood which wasn’t a problem. When I go, I always prepare myself – thinking about what my last HbA1c was, what my current glucose levels are, am I having any complications and other issues like that. It has made me concentrate on my own health because usually the researches are interested in how your general wellbeing is and how well controlled your diabetes is. I hope that one day through research that we might be able to find a cure or have better medicines that will make it easier. Taking part in research also means you are giving something back.

Are there any negatives to taking part in research?

No, I don’t think so. Even in the past before being diagnosed with diabetes I was a ‘research ‘junkie ! I liked to find out some of the things that were going on. In some of the research that I have seen information on you get a ‘mini MOT’ health check and that has to be worth it.

Have you ever had a bad experience taking part in a research study?

No I haven’t, I have always had a good experience.