Research scientists typically excel in laboratory environments, but often lack the people-skills to engage effectively with patients. This incongruity can make clinical research more difficult than it needs to be.
Studies show that patients are eager to have a voice in the way clinical research is conducted. A report published by BMC Health Services showed that 93 percent of patients are “interested in helping researchers design better trials.” Another BMC survey found that 22 percent of patients turn down trial participation for fear of being “treated like a guinea pig.”
The data is clear: patients want to be heard. When pharmaceutical companies treat them like lab rats, patients lose interest in trial participation.
In order to improve public perception of clinical trials, pharma needs to change the way they recruit and involve patients.
Design Thinking can help.
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Before designing the trial, spend time with the patients you want to recruit. Meet with prospective participants and observe their lifestyles. Note the burdens their condition/illness creates; ask what they want from a new treatment and what would entice them to participate in a trial. This phase is about building empathy for your end user.
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Look for extreme patient groups. Patient advocacy groups are a great starting point for information. You can rely on them to be knowledgeable about the disease you’re studying and the benefits of trial participation. However, it’s crucial to stretch your research beyond this base. Find patients who are unfamiliar with trial participation or even dubious about the pharmaceutical industry. People who are less educated about their condition may be harder to engage, but will provide a different perspective on trial recruitment. Talking to patients at both ends of the spectrum can lead to innovative solutions that make trial participation more appealing for everyone.
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Use feedback to shape your design. Patient insight can shape every aspect of a trial. Complex medical concerns can alter fundamental procedures, while simple logistical worries can inspire solutions such as free child-care or fewer on-site visits. Feedback from a well-known study on Duchenne Muscular Dystrophy, a fatal muscle weakening disease, provided critical insight. Families pointed out that the six minute walking test, a hallmark measure of a DMD drug’s effectiveness, eliminated most children under the age of seven and all patients who could no longer walk. Their feedback changed the way these trials were conducted and how regulators judged a treatment’s success.
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Create feedback loops. Engaging with patients isn’t a one-and-done process. As with any agile method, design thinking demands that you return to your end user, share your ideas and ask for feedback again. In the pharmaceutical world, this process can affect everything from trial recruitment strategies to procedural innovations. Moreover, patients will feel respected and heard.
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