“Internet informed patient symposium” by Sebastiaan ter Burg is licensed under CC-BY-SA 2.0
Since Lilly COI’s inception, we’ve been fortunate to meet with many patients and caregivers, who generously took the time to share with us the knowledge and insights they’d gained through their efforts to find and participate in clinical trials.
When we’ve asked them to tell us about some of the biggest hurdles they’ve faced in finding and understanding clinical trials, many said they often came across information that was poorly organized and presented, or information that was incomplete, and lacking in the kinds of details that would truly be helpful to them in making a decision about participating.
At the heart of these challenges, is a past failure on the part of sponsors to fully understand what types of information are really most important to patients and how patients prefer to interact with and receive that information. It’s a multifacted issue, that will require a number of different approaches to address.
We’ve been thinking through several different possible approaches through our work here at Lilly COI. For example, we’ve encouraged innovation in patient and Health IT communities through challenges. We’ve continually worked on ways to enhance our API, which allows developers to work with data from ClinicalTrials.gov more easily. And, we’ve thought about ways we can improve the type of information we’re providing about our studies on ClinicalTrials.gov. More…
One of the barriers to clinical trial participation often cited by patients is the lack of high-quality, well-presented information available about clinical trials. Much of the information that is available, is written in research industry language and frame of reference, and misses the mark in communicating with people who have a need to understand that information.
Here at Lilly COI, we’ve experimented with different forms of online communication, by sponsoring app challenges, participating in social media discussions and webinars, maintaining this blog, and developing visual content, like infographics and widgets.
As we explore these mediums, we are keeping in mind that different people have different preferences when it comes to their preferred communication style. Some prefer to read detailed textual descriptions. Some prefer video or audio presentations. Some prefer pictures and graphs. Many like a combination of all of the above!
Technology continues to play an important role in the clinical development process, by helping to increase access to clinical trial information online, and making that information easier to read and understand. It is also making it easier for individuals to a gain a broader understanding of the drug development process through websites, apps and interactive games.
Gamification focused on clinical research continues to emerge as a way for individuals to learn more about the challenges and intricacies of bringing a drug to market in a way that’s entertaining and engaging. Recently, our friends at LillyPad, whose efforts are focused on public policy, Life at Lilly, and corporate responsibility, released an online game called Destination Discovery, designed to help players unravel the complex processes involved in developing new treatments.
Photo from DrugInfoAssn Facebook page.
Two weeks ago, I was pleased to have the opportunity to attend the 50th Annual Drug Information Association (DIA) Annual Meeting. The DIA meeting brings together more than 7,000 life sciences professionals from all over the world. This year, the event celebrated its 50 year anniversary.
Like Partnerships in Clinical Trials and Disruptive Innovations in Pharma, the DIA conference, for the most part, is conducted by industry professionals for industry professionals. Its focus is primarily on drug development, regulation and research. But, in the last few years, the center of the conference, like the center of the industry, is being pulled toward incorporating more of the patient’s perspective to help improve research and drug development.
The inclusion of a keynote address by Jamie Heywood of Patients Like Me, and of The Walking Gallery, a patient empowerment movement founded by Regina Holliday, were indicators of the changing tide. It was wonderful to see that among top industry professionals, there is no longer a question of whether there’s a need to engage patients in discussions around drug development—it’s now more a question of “how.”
How do we meet patients where they are and provide the right channels for gathering feedback from patients? And what are the best ways to put the information we share about our clinical trials in the patient’s context, instead of only in the researcher context?