Clinical research site professionals (investigators, site directors, study coordinators, and pharmacists) play a very important role in shaping a clinical trial volunteer’s experience. That role can be a complex one, as they work to build bridges between the sponsor’s goals for a trial, the physician’s care plan for the volunteer, and the volunteer’s own needs and wishes. They are often “the face” of the trial, and provide the much-needed personal connection for patients as they navigate the process of participating in a trial.
We know there’s a lot we can learn from their experiences and insights. We recently created a Lilly Innovation Site Advocacy Group to help keep the lines of communication open and encourage innovative thinking around improving the clinical trial experience. Our hope is that we can make site professionals jobs a little easier, and offer exceptional trial experiences for patients.
Photo by Ryan McGuire from Gratisography.com
At Lilly COI, we remain keenly interested in new tools, models, technologies and approaches to addressing healthcare information challenges and to considering how they might be applied to improve clinical research. Through our online travels, we’ve recently come across Iodine and find some of the concepts within their approach worth sharing.
With thousands of prescription and over-the-counter drugs currently on the market, the process of trying to understand what you’re taking can be intimidating and confusing. The idea of reading all the tiny print on the package inserts can be overwhelming. And oftentimes, doing a Google search doesn’t provide much additional help. The search results can include articles from medical journals, websites that list basic drug information and side effects, and discussion boards where patients share their individual experiences with a drug. How do you find time to sift through all of that and make sense of it?
Similar problems plague the process of finding a clinical trial, and of getting access to easily understandable results of the trial afterward. Finding ways to streamline this information and make it more readily available to people is becoming an area of increasing focus. Companies like Iodine are providing us with some examples of how this can be done.
We’re privileged to be working with Rahlyn Gossen, founder of Rebar Interactive, a digital strategy consultancy serving the clinical research industry. Rebar Interactive creates empowering (and award-winning) digital experiences for patients and professionals. Rahlyn’s digital marketing expertise spans a variety of areas, including search, social media, and mobile. Her work is infused with a patient-centric perspective, honed during Rahlyn’s time as a clinical research coordinator.
Rahlyn publishes a widely-read clinical trial blog and newsletter focusing on digital strategy, the patient experience, and innovation. The same topics are explored in 140 characters or less on Rebar Interactive’s Twitter account. Rahlyn also serves on the editorial advisory board of Applied Clinical Trials. Rahlyn is a proud New Orleanian and a connoisseur of cute online animal videos, particularly those of the feline variety.
Tell me a little bit about yourself, and the path you’ve been on to make clinical research better.
“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.
(Editor’s Note: In 2015, leadership of the LCOI-API was transitioned to TrialReach. You can learn more about their continuing work in innovation in clinical trial matching at TrialReach.com.)