feature page 10
Understanding Clinical Research David Mercer, MD, PhD, FRSCS, FACS
We all want to be as healthy as possible, and in this day and age, part of that can be working to be as educated as we can be about our own healthcare decisions. The problem is that suddenly we are faced with SO MANY decisions and issues that it can be quite overwhelming. Trying to understand the results of new healthcare research is a daunting task for anyone.
However, it is also quite possible you don’t have the luxury of a well-informed team and you feel the role of learning about best current treatments is falling on you. This is much more common than you may think. Or you may just want to be truly informed about the “latest and greatest” medical research as it pertains to you, to help you feel comfortable with the choices being made about your health. If this seems like you, then perhaps I can give you just a little framework for investigating clinical trials and research.
If you are dealing with home nutrition, either by IV (“parenteral”) or through your gut (“enteral”), then you are already launched into a world filled with tubes, lines, pumps and fluids. It is likely that you didn’t even know this world existed prior to your current situation either as a patient or as a caregiver. Just understanding all the medication you or your loved one are on right now is plenty hard enough without then trying to keep up-to-date on what is coming in the future.
Step One
Trying to understand the results of new healthcare research is a daunting task for anyone. Let me start by first giving you complete permission to not worry about current medical research if you don’t want to. You are not a bad patient, nor are you being lazy or harmful to yourself or your loved one if this just seems too much for you. Let’s be honest—it can be hard enough to just find a doctor who understands your condition or is interested in treating you. It should be the role of your treatment team (doctors, nurses, dietitians, pharmacists, etc.) to keep abreast of current research and present you with the best option for your situation, or a limited number of options with an explanation to help you choose. If you have a team you trust, you may rely on them if you wish to.
I’m going to proceed on the assumption that you are reading about things because they pertain directly to you and your own health decisions, or to someone close to you. (If you’re studying the outcomes of clinical trials for the sake of general knowledge, well… that’s unusual, but good for you!). I think the first step in reading about clinical trials is to get your own philosophy straight. With your eyes wide open, take stock of all the elements of your current situation—your schedules, medications, what you are happy with, what isn’t good, etc. Then close your eyes and imagine what your life would look like in a best possible situation. Keep this realistic (we would all likely choose to be 100 percent well and have NONE of this…), but also don’t be afraid to dream well beyond your present circumstances. Why does this matter as a first step? Because if you are already very happy with how things are going, then you are unlikely to want to take much risk to gain an improvement—and clinical trials are all about benefit versus risk. If you are trying to decide whether a new intervention is a good idea for you, you have to have some idea of your risk tolerance. So, once you have this figured out for yourself, proceed to the next step.
Step Two
Where do you go for the information you need? Well, let me just say this is also super complicated. Many people are going to turn to the internet or social media as a starting point. Fair enough—but be aware that this is the WILD WEST OF MEDICAL INFORMATION. Everyone on TikTok is “an expert,” you can pretty much claim whatever you want to without responsibility, and almost none of it is verifiable. Continued on next page >