*Disclaimer: Before I begin, let’s get the requisite disclaimer out of the way: this piece has been entered in the Patients Have Power Writing Contest run by Clara Health. It is designed to raise awareness about clinical trials. That said, I’m nonetheless still passionate about this cause, and am personally interested in everything that this contest and this patient-centric company represents. I hope that my post will help raise some much-needed awareness about the importance and power of crucial breakthrough research in science, healthcare, and medicine. #spon
Tom Hanks once said, “a hero is someone who voluntarily walks into the unknown.”
But for many of us, the unknown can be scary — and when it comes to our health, it can sometimes feel like what we do not know can actually hurt us.
However, as the old cliche goes, sometimes the only thing to fear is fear itself. This is especially true when it comes to clinical trials.
Myths and misconceptions abound in many areas of healthcare and medicine — and the world of clinical trials is no exception. Patients may be leery about being a “guinea pig” or a test subject. Some will make jabs about being “lab rats” or be skeptical of “Big Pharma.”
But the truth is that, nowadays, most medical breakthroughs don’t happen without patient-centered clinical trials.
Innovation and progress are vital in many areas of life and in society, and are perhaps most crucial in the healthcare space. Medical research cannot advance without patient empowerment and patient participation. After all, rodent models and other non-human testing can only go so far. Computer models can only do so much. Projections only tell part of a story.
To see real results, researchers need to see real people.
People like you and me.
It seems that in the patient community, the idea of partaking in a clinical trial is something that you only do when all else fails — an act of desperation, or grasping at straws when nothing else has worked in terms of your treatment.
But it doesn’t have to be this way.
Instead, we can look at clinical trial participation as a thing of hope: as a a gift.
Clinical trials are a gift to many: the participant, the research team, and the patient community.
Patients are lucky to get to try out new drugs; the medical field is blessed to have patients who are willing to give their time and their body to help advance breakthrough research; fellow patients are lucky that someone “on their team” is trying out a new treatment that could be something positive for the patient community as a whole.
Hope is the ribbon that ties these gifts together. And medical advancement is the icing on the proverbial cake.
While not everyone is a candidate for every clinical trial opportunity, patients may be surprised to learn how often they are. And aside from the chance for a treatment or a cure, there’s also, more often than not, compensation involved for study participants, as well.
See? Clinical trials really are the gift that keeps on giving.
But it’s about more than money and, ultimately, about more than science. Clinical trials are about changing lives — and, in some cases, saving lives.
Think about whatever prescription drugs you’re currently taking, or whatever FDA-approved treatment or device you are using.
You wouldn’t be enjoying the benefits of these medical advancements without breakthrough research and empowered, informed, proactive, and involved patients who are willing to voluntarily participate in the clinical trials that got these treatments approved.
Are these patients heroes?
Maybe. Maybe not to you personally — but they’re certainly heroes to someone.
Why?
Because patients who participate in clinical trials have had to face the unknown — trying a drug or a therapeutic approach that no one has tried before. And they do it for not only themselves, but for all of us.
They do it for science. For medicine. For the future.
And you can do it, too.
Many local hospital systems (especially hospitals who conduct their own research) have databases of local clinical trials. There are websites where you can sign up for both local and national clinical trial notifications. And there are organizations like Clara Health and other non-profit and for-profit businesses who help to keep patients informed about current medical research and clinical trial volunteer opportunities. And you can also find out about ongoing clinical trials and current studies from Clara’s “Find a Trial” page, here, or check out the FDA’s ClinicalTrials.gov website.
Here’s the thing: you do not need to be afraid.
Many patients worry that they’ll be treated as just another number, just another set of symptoms, or just another test subject for an investigational and unproven treatment. They may fret about side effects, or worry that they won’t understand what they are getting into, and then they’ll be “in too deep” and unable to get out of it.
But the truth is that there are many strict guidelines are in place for both patients and research teams in order to ensure that clinical trial volunteers are treated ethnically, fairly, morally, safely, and respectfully.
So what is Informed Consent? And why does it matter?
This care and concern starts right off the bat. Before any investigational drug can be administered to clinical trial volunteers, patients must undergo a screening and make sure they meet qualifications health-wise, demographically, and otherwise.
The scientists involved must also complete rigorous screening and scrutiny, a preclinical testing process, and must have already completed a certain amount of research. For researchers, these processes are very thorough and can sometimes take years to complete. The goal is to be as transparent as possible and make sure that the research team is on the up-and-up, and qualified to be doing what they are doing.
Also, each clinical trial also has a strict and meticulous informed consent process to help patients understand their rights as a participant. This includes the right to leave the clinical trial at any point, for whatever reason. Informed consent also means making sure that patients have adequate information to allow for an informed decision about trial participation, helps to facilitate the patient’s understanding of that information, and gives patients an appropriate amount of time to ask questions and decide about participating.
Throughout the clinical trial, patients should continue to receive information about the study and/or therapies as is necessary.
Researchers want patients to be informed and comfortable when participating in a research study or clinical trial. The Food and Drug Administration (FDA) also has guidelines in place to ensure transparency, safety, and ethics when it comes to clinical trials, as well.
Patients who opt to volunteer for clinical trials do face a lot of unknowns, it’s true. But patients have power: the power to make a positive change in medical research — and patients have more opportunities to do so than ever before.
I’ve yet to participate in a clinical trial myself, but I happily would if I felt called to do so and found one that fit for my personal situation. I’ve known people personally and from my online patient community who have derived great benefit from participating in research studies and clinical trials — and if nothing else, made a few bucks and helped contribute to medical research.
Thank you to all clinical trial researchers and volunteers!
I am grateful to these folks for giving the gift of themselves and their time in order to keep hope alive.
Every single day, I pray for and dream of a CURE, and thanks to breakthrough research and clinical trials, I know that someday this dream may come true!
Love & Light!
Be well,
– Ashley
Check out Clara Health’s helpful guides, here, and their #PatientsHavePower podcast, here. Or, join the Clara Health #BreakthroughCrew here and help to demystify clinical trials for patients and their caregivers! 🙂
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