If you have been in or near the research industry for any period of time, you know that there is a huge gap between the patients we need and the patients interested in pursuing clinical research. This can feel immensely frustrating, especially when the Standard of Care (SOC) simply is not working and mainstream alternatives do not yet exist. So- what is keeping the patients who need experimental treatment the most from rallying around our research programs? Let’s take a look:
The term “experimental treatment” just screams bubbling green goo and a side effect list too long to read in one sitting. That fear is multiplied when treatment plans cost thousands of dollars and take years to complete. Patients are afraid, sometimes more afraid of this style of treatment than the reality of being out of other options. No one wants to feel like a human guinea pig for “Big Pharma”.
2- Lack of Family Support
Sometimes the patient is on board, but the family has such strong reservations that they are afraid to move forward. For example: Cost (will insurance cover this, will my father lose his retirement savings) and Ethics (are you just taking advantage of my sick wife). Patients need support in order for their treatment to be successful; rolling the dice on alienating their family is not something many are willing to do.
3- Lack of Knowledge
Some patients simply don’t know clinical research is an option for them. Maybe they saw the general research posters in your lobby or the handout you give to every new patient. However, when forced into the middle of the emotional hailstorm that is a life- threatening diagnosis, those pieces of lifeless paper hold no meaning.
So, these 3 reasons patients do not enroll in clinical trials cover a lot of ground. Thankfully, they all have the same solution: Patient Education. Patient education for Clinical Research is not just a check box on your intake form, it is an ongoing process that builds trust, breaks down stigma, and helps patients and their families see what we see when we look at a brand-new trial.
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