Reflections of a Kenyan trialist on participating in a UK based malaria prevention study

I am a clinician and clinical trialist running trials in Kilifi both in the field and hospital. In my various studies we have enrolled over 1500 subjects. I chose to enrol in a trial while doing a masters course in UK because I was interested in the other perspective of being a volunteer, which is something I don’t get many chances to do. It was a trial looking at various barrier interventions against mosquitoes.  Several things struck me over the course of that experience, which might also be relevant in different ways to participants in the trials I run here.

Something interesting was that the consent process was quite different to what I was used to. They advertised the study by sending an email round to the students, and I sent in an email of interest back. They sent me a consent form by email too and gave me an appointment for the first visit. I’ve never run a trial with emails involved before; everything is usually face to face in my trials. I read the consent form on my own and went for the visit. The consent process was extremely brief. “Did you read the consent form and did you have any questions? If all ok, sign here.”  This should be of interest here for the Community Liaison Group who would ask you to go through line by line of the consent sheet and ensure the subject had understood every risk and benefit. Is this a common difference in consent processes between developed and developing countries, or between literate and illiterate populations?  I’d be keen to learn more.

Something that entertained me (in hindsight) was what happened to some of the trial mosquitos.  On that first visit, a test for sensitivity against mosquito bite was performed and there was also some training on how to catch mosquitoes using a motorised sucker. The three subsequent visits involved sitting in a room while 30 mosquitoes were released in a second room to test an insecticide treated door barrier and window barrier. My job was to sit still, and quiet, with my legs exposed, to catch mosquitoes that land and bite. It was an odd 20 minutes just sitting in this set of rooms watching mosquitoes flying towards you and you armed with a motorised sucker to pick them and blow them into the bottles.  Often I did not find all 30 mosquitoes (protocol deviation). I was worried at the time that I might have carried some home which may become infected and spread diseases.  I wonder if my trial participants have concerns that I am not aware of and that I would not predict?

Something that I realised is that being a study volunteer takes sacrifice. I had to make time in my day for the visits which meant I sometimes missed interesting lunch time talks that were scheduled. I remember running to one visit being 5 minutes late as they were quite precisely scheduled. This on top of me not being allowed to shower on the day of the visit as one needed to be smelly. Neither could one shower with soap the night before. Quite a challenge for a Kilifian who is used to showers both morning and evening due to the extreme heat and sweating!

At the end of the study, I received 40 pounds for all the visits, which made me very happy.

Patricia Njuguna is a paediatrician and clinical trialist at KEMRI-Wellcome Trust research programme, based in Kilifi, Kenya.

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