Two weeks ago, I made my way to Philadelphia to attend the Clinical Patient Technology and Engagement Summit, hosted by CBI. At the conference, several speakers from pharmaceutical and contract research organizations presented on topics of patient-centric clinical trial recruitment, volunteer retention, clinical trial protocol design, data collection and mobile innovation.
It was a great opportunity for us to exchange ideas with others in the pharma and clinical research industry on how to use the digital space to reach out to patients, raise awareness about clinical trials, and increase the possibilities of discovering life-altering medicines.
And, it was also an opportunity for me to debut my Walking Gallery jacket, painted by Regina Holliday. Many people approached me to ask about the jacket. I was honored to be able to share my personal story with them, and talk about the how the Walking Gallery is bringing more patient-focus into healthcare. My jacket and story has a direct tie to clinical research and my work with Lilly COI – if we happen to meet, feel free to ask me about it.
Here are a few highlights from the conference:
Open Communication and the Patient Experience
Patient Advocate Jeri Burtchell kicked off the conference with her moving story of resourcefulness and perseverance in the face of a multiple sclerosis diagnosis.
Hoping to find effective treatments after her diagnosis, Jeri visited a new neurologist and learned about a clinical trial for a new multiple sclerosis drug. After some discussion, he handed her an informed consent document to take home, read and discuss with her family. She recalls the document being nearly half an inch thick.
As she read the document many fears and questions came to mind. So much of the information was unclear or confusing to her. So, like many of us would, she turned to the Internet for help, only to find that there wasn’t much help available. When she typed the name of her trial into her search engine her only result was a web page from ClinicalTrials.gov, that appeared to be full of more confusing jargon.
Where was the version of this information that was geared toward the trial participant – the patient?
To illustrate the difference between a participant-friendly consent process and one that’s less so, Jeri developed an online, abbreviated informed consent document with a side-by-side comparison of two different perspectives on trial design. She shared the link during her presentations and asked the audience to vote for the one that seemed most appealing.
You can take the test yourself by clicking on the image below. Which option would seem more appealing to you, if you were thinking about joining a clinical trial?
You probably noticed the more patient-centered option (blue) takes several lifestyle considerations–transportation costs, meals, child care, etc.– into account. These are things that often become barriers to participation for many patients. In addition, there is a significant difference in tone between the blue option and the green option. The green option is written in a voice that says “Here’s what you have to do for us,” whereas the blue option is written in a voice that says “Here’s what we can do for you.”
Under-Represented Populations in Clinical Research
Dr. Gerson Peltz from Bristol-Myers Squibb and Sara Luijpers from the Forest Research Institute both gave compelling presentations on the need to reach out to populations who are under-represented in clinical research. Both personalized medicine and a greater understanding of epidemiology show how important it is to be able to include people of all ethnicities, ages, cultures and genders into clinical research. They both shared how we can be more effective in bringing participants to clinical research by leveraging community leaders and integrating clinical trial recruitment efforts into local cultural norms and events.
These presentations reminded us that as we’re working to develop new ideas, applications and prototypes, we need to make sure we’re not overly focused on a one-size-fits all approach. We’ll need to continue developing ideas that are adaptable and flexible, so that they can be easily adjusted to meet the needs of communities with a variety of different needs and cultural expectations.
According to CISCRP, only 6 percent of people who suffer from severe, chronic conditions participate in clinical trials. We need to increase that number in order to bring more effective treatments to all types of patients. One of the avenues we’ve been exploring, is how to improve patients’ access to clinical trial information, and how to present that information in a more engaging and comprehensible fashion.
We recently had a little help in this area, through the many talented developers and designers who entered our Clinical Trial Visualization Redesign Challenge. The purpose of the challenge was to not only bring forth more patient-friendly ways to share clinical trial information, but also to serve as a spring board for even more great ideas. All of the designs are available for use in the public through a Creative Commons license, which means that anything you see in the Submissions Gallery can be borrowed and adapted for your own purposes. Whether you’re a patient advocate interested in adding clinical trial information to your blog, a software developer, or a study site director looking for creative ways to reach out to patients, you can leverage the designs resulting from the challenge.
The competition ended late last month, and the winners will be announced here on our blog on Nov. 14. We hope you’ll check back to see who gets the prizes, and to let us know what you think about the winning submissions!