Editors note: please be sure to vote in our poll at the bottom of the post!
There are many factors that can turn a patient away from seeking potentially beneficial treatment options. This is true for both clinical trials and even routine visits to the doctor.
For example, in some people, needle phobia prevents them from getting much-needed vaccinations. In some cases, people just wince when they see a needle and go through with it anyways and in others – their intense needle phobia prevent them from getting vaccinations altogether.
We recently came across an interesting approach Healthline is taking to help kids ease through their needle phobia.
By using a storybook iPhone app, “Big Shots Get Shots” tells the story of Pablo the Putterfish. The storybook app serves as a distraction at the doctors’ office and takes children on a journey with cute sea creatures, jigsaw puzzles and drag and drop games. Helping kids see the benefits of vaccinations is critical and life-saving, as vaccines are a key component to personal and public health.
Looking to clinical trials
We seek to find out what factors turn patients away from participating in clinical trials. Part of our work at Lilly COI is to help bring about change to clinical trials to make them more patient focused.
Through our conversations with patients such as Jeri Burtchell, we’ve seen tangible ways to help make clinical trials and the journey as a patient in these trials more appealing.
Her ideas have been echoed by others in the patient community and directly inspire our work today.
Once enrolled in a trial, The Association of Clinical Research Professionals Monitor Journal shares some reasons why patients withdraw from clinical studies. Among them are:
Study fatigue (when patients tire of their study duties) is the main reason for non-compliance. If the study is particularly lengthy, the study team should discuss the patient’s willingness to comply with all study related procedures stressing the length and rigorous requirements prior to the subject enrolling. Subjects may tire over time of taking study medication daily or returning for monthly follow-up visits.
Lost to follow-up
Subjects who are lost to follow-up typically become the responsibility of the research coordinator. It is her job to start contacting the patient right after the missed visit. Standard practice is calling three times before declaring the subject lost to follow-up. Attempting to call at different hours in the day may help. Leaving a friendly message with words of encouragement is also a good idea. To prevent lost to follow-up due to phone number or address change, confirm this information at each visit.
Perhaps a proactive approach to reducing drop out rates could also help make trials more attractive to participants up front. We’re looking at ways to help inform patients from the beginning of a trial about the length, treatments and tests involved with the trial. We believe that if clinical trial patients are presented with useful information about their experience during the trial early on, they’ll be more at ease.
Also, we’re investigating mobile apps that will present new ways patients can keep in touch with their testing center. If a patient is going to miss an appointment or they need to change a phone number/address, there are innovative ways on the horizon to be sure they stay in touch.
Game up, level up
Gary recently posted on the idea of gamification, that is, applying aspects of video games, such as badges and other incentives, to non-gaming situations. What if we applied gaming concepts to clinical trials? For example, we could give rewards for checking-in to a research site visit or completing tasks.
As Jeri says in the comments of the gamification post:
Science is a serious business, but incorporating something fun and rewarding into the process to encourage compliance or retention is appealing on a human level. We all love to be rewarded.
What are your concerns?
We seek to gain your perspective on what concerns you have about participating in a clinical trial. Please take a minute and vote below on the options that aligns with your perspective. If you’d like, also write in your concerning factor: