Trigger Warning: discussion of weight, blood.
After over four years in the industry to date, it’s safe to say that I am very familiar with the behind-the-scenes work of running a clinical trial. I know the challenges of obtaining the data we need when we need it, and I know all too well how difficult it is to recruit participants. From patients simply not meeting the medical criteria to participate, to those not wanting to participate due to lack of time, money, or trust in the profession (which, given the horrifying acts carried out in the name of medical research in the past, is hardly surprising), recruiting enough participants to have a meaningful sample size is incredibly challenging. That’s why, when the letter arrived informing me that I had been invited to participate in a clinical trial, I leapt at the chance (figuratively, anyway).
Here’s a short video about my experience.
I’ve actually participated in two clinical trials recently. The first one, Decode ME, is investigating genetic risk factors for myalgic encephalomyelitis, and since I wasn’t selected to provide a saliva sample, all I had to do was complete a questionnaire. The second clinical trial has been a little more involved.
Our Future Health is what we would describe as a prospective cohort study, which takes baseline readings and follows participants up periodically throughout their life, recording changes in health with time. This type of trial is used to identify patterns and establish potential links between factors like cholesterol levels and cardiovascular health issues later in life, and often forms the precursor to more specific randomised controlled trials, which are the type I work on.
I was recruited via my GP surgery, a common strategy used to identify potentially eligible participants for clinical trials. Upon receiving the letter, I consented to the trial online and booked an appointment to go to a clinic that had been set up in a nearby shopping centre, where baseline measurements would be recorded.
When I got there, I had a whole host of measurements taken; height, weight, blood pressure, heart rate, blood levels of different types of cholesterol and even blood triglycerides, hybrid molecules formed from fats and sugars. I know that the blood I gave will be sent to a lab for genetic sequencing among other things. At the appointment itself the nurse was very helpful, offering some physical support to aid my balance while my height and weight were recorded, and allowing me to remain in the wheelchair for all of the other tests. I was even complimented on my “good blood flow”. It was honestly the most thorough health check I’ve had in years.
At the end of the appointment, all results barring those that needed laboratory input were shared with me. My heart rate was excellent but my blood pressure was a tad high, although there was no immediate indication that my artery walls are becoming too rigid. My triglycerides were normal but all types of cholesterol were high (both “good” and “bad” types), although upon further investigation of some recent papers, having had my gall bladder removed a few years ago could partially account for this.
Interestingly, BMI was not calculated in the session, despite BMI being a tool for precisely this purpose; it was never meant for use in individuals but to map characteristics across a large group, where its many flaws can be somewhat accounted for. I still decided to calculate it for myself once I got home anyway, more out of curiosity than anything else, and unsurprisingly found myself in the overweight category. I’ve actually been trying to shift some weight for a while, but it’s particularly difficult to lose weight when you can’t exercise. All told, for someone who hasn’t been able to exercise properly in over a decade, I’m not doing too badly!
It has been really interesting to view clinical trials from the perspective of participants, and it will certainly influence my decision-making at work. Not all clinical trials are quite so easy to be involved with. Depending on the trial, participation can be very intrusive and intense. That said, being involved has it’s benefits other than the warm, fuzzy feeling of helping to improve future healthcare; the care provided in the trial is closely monitored to ensure it is of a certain standard, and you may even gain access to new treatments not yet available to the public.
I am of course incredibly biased in saying this, but having experienced the turning of tables, I would strongly encourage participating in clinical trials should the option ever arise.