What Type 1 Diabetes Patients Care About in Clinical Trials [Survey Results]

Clinical research organizations sometimes create surveys and share general statistics about clinical trial participation. But every patient is different, and overarching stats don't tell the full story.

At Antidote, we wondered how clinical trial preferences might vary based on the specific condition someone was living with. We worked with several of our partners to figure it out. In this blog series, we're sharing your data back with you.

By working with the JDRF and other trusted partners, we had the opportunity to learn what clinical trial factors matter most to people living with type 1 diabetes (T1D) and caregivers.

We hope researchers will use our findings to better understand the specific motivations of T1D and make it easier for patients from all backgrounds to take part in research.

What factors matter most to people living with type 1 diabetes patients?

In our survey, we asked, "If you were considering taking part in a clinical trial, how important would the following be to you?"

Above all, it was most important to people living with T1D and caregivers that the treatment under study is a better alternative to an existing treatment. This was more important than receiving support from your doctor before joining, or receiving payment to participate.

Interestingly, those with T1D were least likely of all the groups we surveyed to say doctor approval was "important" or "very important" to their interest in participating in a trial. This may be because our sample group, surveyed by JDRF, may be particularly well-informed and confident about their health decision making.

Besides dividing up our research by condition area, we also analyzed results by race and ethnicity, income level, education level, and sex. When looking at clinical trial considerations, we did see some differences by education level. Those whose highest education level was some high school/HS diploma were more likely to feel that doctor approval was important to them. This finding may suggest that those who may have lower health literacy may prefer to receive more support from a physician when choosing to participate in a clinical trial.

Understandably, we saw significant differences in importance of compensation/reimbursement and free care by income level, with those at lower income levels citing payment as being more important. In general, phase 1 clinical trials are most likely to offer compensation for participating. Later-phase trials may not offer payment for participation, but could consider covering travel or other expenses to make it easier for patients from a variety of backgrounds to take part.

Engaging volunteers from all socioeconomic backgrounds

We also asked about the logistical factors that may be taken into account when deciding whether or not to join a clinical trial. Overall, it was most important to respondents that they be able to complete the entire trial, undergo all of the medical procedures or tests involved in the study, and get to the location of the study easily. It makes sense – if you sign up for something, you want to be able to see it through.

These results largely held across education level, income level, race, and sex – with a few exceptions. In the survey, those with a high school degree or some college-level education were more likely to say that electronic health trackers are an "important" or "very important" part of a clinical trial. This finding suggests that in addition to improving engagement and data quality, smart watches and other ePRO devices may make clinical trials more appealing to a wider audience of patients. These tools can help reduce the number of site visits and improve patient engagement during a trial, as well.

Home visits are another potential solution for patients concerned about being able to complete a clinical trial. While this option ranked last overall in terms of percentage reporting its importance, participants whose highest level of education was some high school/HS diploma were nearly 20 points more likely to choose this option. This finding suggests that including home visits in a clinical trial may help make it more possible for patients with this background to take part.

Moving research forward

Our survey findings show that people with T1D want to participate in clinical trials that research potential new treatments. They also reveal some of the factors that help make it easier for patients from all backgrounds to participate: easy-to-reach sites, transportation support, and tools that can help reduce the number of site visits.

It's critical that researchers apply these findings to study design to help encourage participation and bring new options to the 1.25 million Americans living with T1D. Interested in taking part in research yourself as a volunteer? Start your search for a clinical trial near you below.