My experience of being a research participant (a long time ago!)

IMG_4290Even before I became a research nurse I remember taking an interest in consent.  I still remember unfortunately all to clearly a doctor putting a consent form in front of me to sign for a procedure and in my post-partum, entonox induced state my declaration that I would sign her form but I just wanted to point out that I was in no fit state to provide informed consent!

Many, many years earlier though I took part in a research study and parts of this experience (in particular the consent process) has certainly shaped my practice to some degree.  I thought I might share my memories of participating and wondered if there were any other nurses who have had positive experiences of participation in a clinical trial?

I remember seeing the study advertised on a poster in the hospital I was working at.  The first thing I saw, I will admit, was the money.  I know what you’re thinking, this isn’t the best of starts.  OK, things could have gone very wrong at this stage.  I was a student.  I needed money.  However, my eyes quickly turned to what was actually about and I was hooked.  This was a vaccine study – the aim?  To try and see if a vaccine could be developed to prevent Malaria.  Wow.  I was really interested.  To take part in something that could potentially have far reaching benefits for huge numbers of people.  I had to find out more. I called the number and arranged to meet with a researcher who would explain the study in more detail.

I remember sitting chilling out in the canteen with the researcher.  I felt happy, I felt altruistic, I was extremely vulnerable.  But he was absolutely superb.  I’m sure I was probably fairly dismissive of all the extra information (had he mentioned that there were 4 types of malaria and they were going to give us the most deadly…) but he took plenty of time.  I mean, really he did.  We were there for well over an hour and I started to properly engage with what they were asking us to do and the commitment to the study.  We would be injected with the vaccine and then there would be a visit to London where we would have a cup with a mesh over the top.  The cup contained mosquitos with the falciparum malaria and we would put these on our forearm until they bit us.  Then, we would be checked daily just in case we did actually develop malaria and this would be a blood test and the blood would be looked at under a microscope by an expert.  OK, fine.  I don’t recall if I had any questions but I do recall how I felt.  I certainly had no fear;  I was excited to be given the opportunity to be taking part in such important research.  I was reassured that although the type of malaria was the most serious it was also the type that didn’t recur and was treatable so I was OK with that.  By the end of the conversation I had a really good understanding of what the research involved and my commitment to coming back daily for blood tests etc.

Well, fast forward a few weeks and sure enough, I got malaria.  I am not sure if I thought I would or not but going in every day and seeing my fellow trial participants getting it I guess it was pretty obvious I was going to be ill.  Armed with some anti-emetics and treatment medication I went home to try and cope with it as best I could.  It was horrible.  I had symptoms for maybe 2-3 days.  They could see from my blood that I had it before the symptoms came and started the treatment hence why it was relatively short.  But at the time I guess I just thought about how horrendous it was for people who actually had malaria with no treatments, no pre-warning and poor healthcare facilities.

We got to know each other as a group of participants and it was good.  It was summer and I think we all got together at the end of the study to have a picnic I think it was in an Oxford College.  My memories of the study are really positive.  Although I got malaria I had been aware that this was obviously a possibility.  The consent process is what sticks in my mind the most.  The researcher had a very willing volunteer in front of him – he could well have just shoved the consent form at me but he didn’t.  He was really conscientious, and took his time to make sure that I made a properly informed decision.  Because I knew what would happen I stuck the duration of the study and had the reassurance that these things had been well thought through and explained to me.  When I got malaria I didn’t panic, I was well supported and knew that it would get better as unpleasant as it was.  If I had severe symptoms I would be admitted to hospital.  At the end of the study, we found out that although the vaccine hadn’t worked, they did have findings that would help them in the next stage of their research and that was good enough for me to feel satisfied that my efforts had been worth it.

So, do I have any regrets?  Well, there was one consequence that I hadn’t foreseen and neither had the trial team it seems.  I regularly donated blood – a couple of times a year – but when I went to donate after the study, they said they weren’t able to take my blood as I had had malaria.  This was a big disappointment to me and I found out that I probably would never be able to donate again.

So, there you go, I have had other experiences of being a research participant but this is the one that sticks in my head most clearly maybe because it was the most involved one.

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