Increasing Clinical Trial Literacy with an Interactive Web App 4

clinitrial simulator open

According to a preliminary study recently published in PLOS ONE, patients “understand clinical trials better with some interactive help.”  We recently stumbled upon a great example of this from the U.K. in the form of video game that walks a potential volunteer through each step of a clinical study.

UK seeing increase in clinical trial participation

Since its inception several years ago, The U.K.’s National Institute for Health Research’s Clinical Research Network (NIHR CRN) has focused on reducing the red-tape surrounding clinical trial set-up and increasing the number of British citizens participating in clinical trials. From 2009 to 2013 clinical trial participation in the U. K. has increased from 454,138 to more than 630,000. That’s an increase of more than 38 percent in just a few years’ time.

While it’s difficult to pinpoint exactly why enrollment has grown so much recently, it appears that a concerted effort to educate the public about the importance of clinical research may be playing a role.

Learning by playing

The London (North West) CLRN ( a branch of the NIHR CRN) may be helping to increase the public’s clinical trial literacy through their fun and interactive Clinical Trial Simulator. The game was designed to look like a retro 8-bit Nintendo video game, and takes the user on a journey through a fictional clinical trial involving a drug that can make people fly.  At every turn, the user meets the people who are involved in running the  trial and receives helpful information about key aspects of the clinical trial experience, like the signing  of the Informed Consent Document before beginning the trial.

clinical trial simulator - informed consent

Walking through the process

In a real clinical trial, the trial protocol and informed consent document are often a stumbling block for potential volunteers. They tend to be written in high-level technical terms, making them difficult for the patient to read and understand.

As the patient continues through the game, they go through an initial screening visit, take their first treatment and allow the doctor to test how the treatment is working for them.  In the process, it helps the player to understand technical terms like, eligibilityblind trialstandard of carecontrol group, and trial group, and gives them several opportunities to decide whether or not they want to continue with the trial.

What if we could perhaps offer this type of information to patients in the same engaging and interactive manner as the Clinical Trial Simulator? We’ve asked technologist, patients and clinicians to join our Clinical Trial Revisualization Design Challenge to help us imagine what an engaging Clinical Trial Protocol and Informed Consent Document could look like.  (The deadline for submissions is October 2, so there’s still plenty of time to enter!)

End game

At the end of the game, the user is asked whether they now feel better-informed about clinical trials and whether they would ever consider participating in one. In an email conversation, London (NW) CLRN Communications Officer Peter Handford estimated that of the few hundred who have participated in the simulation around 90 percent said that they would be interested in participating in a clinical trial in the future.

end of simulator survey

What have we learned?

So, what does that tell us about increasing clinical trial participation in the United States and other countries? That by creating hands-on technologies that simplify the information patients need, and adding a little levity, we can possibly take some of the fear and uncertainty out of participating in clinical trials; which might also lead to increases in participation, similar to those our friends in the U.K. have experienced.

What kinds of clinical trial applications do you think would be most useful to patients? Tell us in the comments below. Your feedback could help inspire our next proof-of-concept project!

4 comments

  1. Jerry & the Lilly COI team – thanks for this post: I might have missed this very interesting work from overseas without this blog & Twitter feed. Regarding the NHS’ work – very cool! I think we talked about somehow doing something like this using [AV]R (augmented/virtual reality) using devices such as the Oculus Rift (http://www.oculusvr.com/) or similar device.

    I bet this same technique could be used for outpatient (or even inpatient) surgery centers as well as doctor’s office visits that often cause fear such as a child’s first physical or dentist’s visit all the way up to colonoscopies and OB/GYN exams.

    All that being said, as you all point out on this site, clinical trials have a huge potential to improve care for the participant and the whole affected population at large!

    Thanks again for keeping this blog going!

  2. Well, an app that explains the inclusion and exclusion criterias of specific trials simply, as well as offering some kind of interaction if the person has a question or a follow-up

  3. Pingback: Game Developers Offer Interactive Lessons on Clinical Trials « lillycoi

  4. Pingback: Play Destination Discovery « lillycoi

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