Photo by Standford Medicine X
On July 30, an article in the Wall Street Journal titled “Clincal Trials may be Compromised by Online Patient Chatter” prompted a lot of discussion among patients and researchers on Twitter. At the heart of the article is a concern shared by many sponsors and researchers: By discussing their participation in trials through blogs, social media, and online forums, patients may be unblinding themselves and compromising the scientific integrity of the studies.
While this is a legitimate concern,and something that should be addressed with input from patients and patient communities, it’s important to remember that open communication online can be just as much—if not more— of a value to clinical research than a threat.
That’s one of the reasons why I’m excited about the opportunity to present at Medicine X. I’ll be talking about about some of things my Lilly COI colleagues and I have learned through our journey into social media, connecting with people and engaging them in clinical research.
Click the image to view the infographic.
Tom Krohn recently wrote about our efforts to share more useful clinical trial site contact information with the public on ClinicalTrials.gov. Many of you—as a patients, caregivers, researchers, or curious citizen scientists—may have already visited ClinicalTrials.gov to explore clinical trials. But, for those who haven’t, or for those who would just like know more, we thought it might be helpful to look into the site’s origins and intentions with our latest infographic.
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.