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?
Note: The following post is a collaborative effort between Nina Grigoriev, Sara Holoubek, Julia Wu and Jerry Matczak. After running into each other at this year’s Health Datapalooza, we wanted to share our experience and value in making unexpected connections.
Health Datapalooza, now in its fifth year, is hosted by the Health Data Consortium (HDC). The HDC’s mission is to “cultivate the new thinking, innovative practices, and the system-wide reform needed to help tackle the enormous and complex challenge of harnessing health data.”
A couple of weeks ago, we had the opportunity to attend Health Datapolooza in Washington, D.C. It’s one of the most inspiring and diverse gatherings of the year, fostering what U.S. Department of Health and Human Services CTO Bryan Sivak and White House CTO Todd Park have called “serendiptious collisions.”
This year, Nina Grigoriev, Sara Holoubek, Julia Wu and Jerry Matczak were thrilled to have their own serendipitous collision, which to them, proved the real value of attending the conference. Allow them to introduce themselves, and explain how their collision came about…