The shoe on the other foot: what can Trialists learn from participating in research studies?

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As a researcher working in global health, I have also been involved as a participant in four different clinical trials, including two vaccine trials (one phase I), and two enteric fever challenge studies – one is ongoing right now, and I duly drank a suspension yesterday which contained paratyphoid or typhoid (a strange way to start the week!). With the recent crisis in the Phase I trial in France, I have been pondering what it is that encourages one to take part in clinical research studies, and what this means for recruitment and the ways in which trial teams relate to participants.
I am often surprised by peoples’ reactions when they hear that I sometimes participate in trials; even other research staff are sometimes horrified, and I’ve often been asked ‘aren’t you scared you’re going to grow an extra arm?’ or ‘but what about those patients that died in London in 2006?’. It is interesting that there is such mistrust over participating in clinical trials, and even as a serial participant, I feel like I am relatively conservative with the trials that I consent to; I usually discuss them indepth with medic friends before deciding whether to take part. While I was drinking my enteric fever bacteria yesterday, it struck me just how much trust I am placing in the specific study team with whom I’m interacting. Each study, I am putting my health in their hands, and I wondered what it was that makes me so sure that I am doing the right thing in trusting them.
While I have to say that it was the monetary incentives which initially interested me in taking part in my first clinical research study, the thing that has made an overwhelming difference in my participation in that first study, and thus in reassuring me to take part in other studies, is the clinical research team themselves.
All four of the studies I’ve taken part in have been with the same research group, and they have been unfailingly professional and polite, but above all – human. From screening to close-out, and no matter how busy they are, the investigators, admin staff and nurses have taken the time to listen carefully to my questions or symptoms, and to be generally attentive and respectful. They have been helpful, reassuring, and even when things are not going their way (for example, when new staff are being trained on their database and it is clearly playing up), they have remained cheerful and professional. However, I think the thing that makes a real difference is that they make the effort to regard every patient as an individual; for example I’ve noticed that with other patients too that they remember to ask about work, children, and to be talkative and friendly. As a result, study visits are generally reasonably pleasant experiences; quite impressive given that they involve all manner of samples.
I wanted to share this experience, because this interaction is without a doubt the most important factor which has reassured me to participate in these multiple studies, and it’s therefore important to all of us when recruiting and retaining participants. Fortunately, it’s also something that all staff can achieve in their day to day work when interacting with participants; we don’t need to go on courses to learn new skills, or apply for new grants to achieve it. We can simply ensure that, before each patient, we take the time to be respectful, to be interested, and above all – to be human.