A Patient’s Experience in Research
Good morning and welcome to another edition of Riding in Cars With Researchers. I’m Dr. Jeff Kingsley and today we’re going to talk to patients. We’re going to talk about the research trial experience that patients get. First off, most of you are afraid of research, or at least apprehensive. You were raised around doctor’s offices. Your parents took you to the pediatrician and you got vaccinations when you were a kid. When you got sick, you went to the doctor and the doctor helped you get better. So, you grew up with a familiarity with normal healthcare, and while you may not like going to the doctor, it’s also not that scary. But research is something that most people have had no experience with whatsoever. And so, without any sort of experience, without any sort of context, it’s normal for people to say, “Well wait a minute, is this something that is going to hurt me? Is this something that is going to get me in trouble? Is my doctor going to fire me if I enter a research trial?” All of the typical questions that come up from patients normally. Most patients start with the classic question: “Am I going to be a guinea pig?” That classic image in your head of a lab rat- which is not the case at all!
The Reality of Research
So now, let’s talk about what the reality of research is. Let’s talk in general terms about the broad patient experience. Tufts University is out of Boston in the U.S. Tufts has a research center that studies research. It’s called the Center for the Study of Drug Development and they interview researchers routinely. They interviewed patients annually and publish their results. So, when patients are in research trials, how do they feel about it after their first ever experience with research? Remember, I said nearly everybody starts from the premise of “am I going to be a guinea pig?”
Here’s what their research shows: 98% of patients who’ve been in a research trial readily say they would enter another – nearly 100 percent! 98% enjoyed the process so much that they readily say, “I would enter another research trial.” And I think this one’s even bigger: 96% say that they would refer friends and family into research trials. 96% gained such a level of confidence from their experience in research, they would recommend friends and family to research. That’s dramatic! That’s so cool. So how do we get more patients involved in research? Because clearly the evidence shows that they love it once they’re involved in it; we’ve got to talk about it more. Research just isn’t mainstream. It’s not out there in the public eye and what is, involves only the negative of research. It’s only when somebody did something wrong that research makes the press. It’s not when somebody did something right.
How Innovation Happens
All of the great things that we do every day go unsung, largely. We have to get physicians talking about research more. We have to get more publicity around the benefits and the wonderful things of research because it’s a tremendous benefit to patients, to physicians, to all of healthcare in general and frankly to our economy. This is how innovation happens. This is how we learned to cure cancer. This is how we make all of these game-changing breakthroughs that we’re able to. So, patients, if you get involved in research, trust me, you’ll love it and spread the word!
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