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Changing the Conversation When it comes to health care, the stakes are incredibly high. Anyone anywhere can participate in Science 37 clinical trials. Successful clinical researchers must draw on not only their medical training but also their knowledge of such areas as statistics, controls and regulatory compliance. Everybody is doing this research together.”. Clinical research explores whether new treatments, medications and diagnostic techniques are safe and effective in patients. At Science 37, we realize that some words, or more specifically, some clinical research terms, can be disengaging or even offensive to the very people we want to help. “In clinical research, we’re trying to define the best treatment for a patient with a given condition,” Frank says. Untangling the Term “Clinical Trials” “’Clinical research’ I think elevates the participants to the level of the people who are doing the research. On the surface, both may sound harmless. “We’re asking such questions as: Will this new treatment extend the life of a patient with a given type of cancer? Learn more about research at Dana-Farber. So how do we shift the conversation around some of these terms? Lab based research occurs in, you guessed it, a lab. They’d refine and test the compound on intermediate models, in laboratory and animal models. However, Mills points out that when a patient community is trying to destigmatize what it means to live with a certain condition, the reverse may be true. How do mutations occur? “Biomedical science is so complex, and there’s so much knowledge available.” Frank says. “There is always conversation flowing in both directions. Then they would analyze those test results to determine proper dosage, side effects and other safety considerations before moving to first-in-human clinical trials. But it involves research with something other than actual humans working on stainless steel lab tables. At the most basic level, clinical research is the testing of theory and application, while translational research facilitates the connection between the study and its practical applications to people. “As ‘clinical trials’ have been the more common way of referring to them, I think that some people might be looking for a clinical trial [when they search online],” Mills says. There are important distinctions among the three principal types of medical research — basic, clinical and translational. But for people who have diabetes, “people with diabetes” is often preferred because it implies that the disease is just one part of their lives, whereas “diabetic” may imply that they are, However, Mills points out that when a patient community is trying to destigmatize what it means to live with a certain condition, the reverse may be true. Shifting the conversation around potentially problematic research terms starts with shifting our perceptions. “There’s also a lack of full understanding of what the entire clinical trial cycle is and the complexity of it. © 2014 - 2020 Science 37, Inc. All Rights Reserved. Word choice can make the difference between making more money or getting fired. The key is figuring out the language that feels right to each community and what helps people see themselves as collaborators in the research. “The way we perceive people, it’s a really interesting thing,” Mills says. It expresses the importance of their role and the way that they are collaborating with the people in the white coats on an equal basis. It goes beyond a word. For example, should researchers refer to those in the diabetes community as “diabetics” or “people with diabetes”? “I think that ‘clinical trials’ has a connotation of a passive role for the people involved who are not the scientists,” Mills says. What is Bone Marrow Failure and How is it Treated? In the autism community, for example, many people don’t mind being called “autistic” as opposed to “a person with autism.” The guiding belief here is that autism is an inherent part of who they are and is not a disease to be cured. And beyond that, will the average potential participant understand the attempt to be more inclusive by opting to use the word “research” instead of “trials?” It’s difficult to move to a new term when the old one wasn’t widely understood in the first place outside of the research community. Clinical research on the other hand is research that involves human beings. I think that for people who are removed from science, their first thought about science always starts with a scientist in a lab,” Debidda adds. Translational research provides a crucial pivot point after clinical trials as well. “Now, using modern molecular techniques,” Frank says, “we can learn so much from a tissue sample from a patient that we couldn’t before.”. It was like an entire shift in how I saw this person, from someone who is laying in bed and sick to how you normally interact with a person you would meet on the street. Clinical research, then, takes those solutions and studies them in clinical trials. For example, oncologists now know that mutations in DNA enable the unchecked growth of cells in cancer. “If you’re calling it something different, the recognition might not be there, but I absolutely think that ‘clinical research’ is the more appropriate term.”, Is “Clinical Research” the Answer? “There is this connotation of being part of an experiment. Science 37’s Marcella Debidda, vice president of patient affairs, and William Mills, patient experience manager, discuss how certain words create meaning and position in research. Clinical research involves studying human subjects through surveys, health services research, or clinical trials. “I worked in intensive care a lot, so people were lying in bed all the time. I worked in intensive care a lot, so people were lying in bed all the time. Everybody is doing this research together.”, On the other side, researchers need to show that they understand the people behind the disease that they’re studying and how to make them feel supported. Debidda says it begins by creating patient-centered discussions around terminology and adopting the terminology that we feel represents what people are most comfortable with. “Think of that moment when an apple fell on Isaac Newton’s head. It consists of careful and narrow testing of hypotheses that are heavily regimented and regulated. How do you engage people and get them interested in research when the term “clinical trial” may conjure images of human guinea pigs? A scientist conducting basic research might ask: How does DNA work in a healthy cell? and what goes into the process — actually makes it harder to abandon the term. Clinical research is what is performed in a healthcare environment to test the safety and effectiveness of drugs, diagnostic tests, and devices that could be used in the detection, treatment, prevention or tracking of a disease. “’Clinical research’ I think elevates the participants to the level of the people who are doing the research. Science 37’s Marcella Debidda, vice president of patient affairs, and William Mills, patient experience manager, discuss how certain words create meaning and position in research. It’s neither practical nor safe to transition directly from studying individual cells to testing on patients. Translational research provides that crucial pivot point. It was such a…I don’t know exactly how to describe it, but it made me so aware of the perceptions that we can have of people that are sick and how it changes the way we feel about them.”. It can make the difference between getting back together with your spouse or filing for divorce. — to answer fundamental questions about their structures and how they work. At Science 37, we realize that some words, or more specifically, some clinical research terms, can be disengaging or even offensive to the very people we want to help. “If you think of it in terms of construction, you can’t put up a beautiful, elegant house without first putting in a foundation,” says David Frank, MD, Associate Professor of Medicine, Medical Oncology, at Dana-Farber Cancer Institute. Battling Perceptions Part of that new narrative is understanding that both researchers and participants have valuable knowledge and insights to share. Translational researchers would then evaluate thousands, if not millions, of potential compounds for the ideal combination that could be developed into a medicine to achieve the desired effect. Copyright 2020 Dana-Farber Cancer Institute 450 Brookline Avenue, Boston, MA 02215 Call us: 617-632-3000. It bridges the gap between basic and clinical research by bringing together a number of specialists to refine and advance the application of a discovery. On the surface, both may sound harmless. The key is figuring out the language that feels right to each community and what helps people see themselves as collaborators in the research. They can enlighten us, delight us, or offend us. On the other side, researchers need to show that they understand the people behind the disease that they’re studying and how to make them feel supported. “Basic research is fundamentally curiosity-driven research,” says Milka Kostic, Program Director, Chemical Biology at Dana-Farber Cancer Institute. 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