What motivates patients to participate in a clinical trial?
Antidote takes pride in connecting people with medical research opportunities. But what motivates patients to participate in a clinical trial? We asked 4,000 volunteers and caregivers to help us understand their motivations so we can find better ways to engage patients in research. Here are some of the top reasons why patients volunteer for research.
The possibility of discovering life-extending treatments
Many patients volunteer for clinical trials because they want to help find life-extending treatments for themselves and for others living with their condition. In our survey, 55% of respondents with cancer said that joining trials to extend their own life was “the major reason” for participating. It makes sense that this number is lower outside of oncology, with 8.8% patients with chronic diseases with acute onsets and 11.1% of other chronic disease patients citing life extension as a participation motivator.
It’s clear that extending life is a top priority for cancer patients. For example, when considering taking part in a clinical trial, 97% of respondents with melanoma would be motivated to take part in a trial that “provides me with a drug, therapy, treatment, or medical device that potentially could extend or improve the quality of my life.”
Our findings suggest that it is rarely the main motivator for those living with other conditions, however, and may also be less of an incentive for women considering participation, and more of one for those in higher income brackets. According to our data, women were less likely to say they joined a trial to extend their own life: 40% reported “this was not the reason,” compared with 29.4% of men. People earning more than $100,000 were also more likely to say that extending their own life was a major reason for participating.
Our survey found that altruism is the primary reason people want to contribute to research. Helping future patients was the most popular reason for participation: 34% of those surveyed cited this as a reason to take part. This was particularly true among people living with chronic conditions.
Because this is a major motivator, it’s critical to reward and respect patients who participate out of a sense of altruism. Even if a study team is not able to offer compensation, making patients feel appreciated goes a long way. One way to do this is to ensure that patients receive the results of the studies they participate in: 91% of the public considers it very important to receive a study summary after participation, but only 53% of those who participate receive one.
“I want to receive the best care possible”
Between academic medical centers, private sites, and pharmaceutical labs, clinical trials provide patients with access to the latest innovations in medicine. Among patients surveyed who had participated in research, 62.5% said that wanting to receive the best care possible was either “one of the major reasons” or “the major reason” for participating. This response highlights both a desire for improved quality of life and for a longer life.
Not only do volunteers receive the best care possible, but they do so at free or reduced costs. Overall, receiving high-quality care at a low cost in a clinical trial appeals almost equally to those across the socioeconomic spectrum.
Putting patients’ considerations at the center of clinical trial discourse is crucial. Check out our whitepaper, “Portrait of the clinical trial participant,” to see a full picture of what matters most to clinical trial participants.