Aiming at Target Profiles to Create Better Patient Experiences 11

"On Target" by ViZZZual.com is licensed under CC-BY-2.0

“On Target” by ViZZZual.com is licensed under CC-BY-2.0

Last November, Tom Krohn announced that we would begin collaborating with Novartis and Pfizer to build a consistent framework for clinical trial eligibility criteria by developing target profiles and implementing them in our API. Our shared mission was to make it easier for people to find clinical trials that are right for them or their loved ones.

(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.)

Not long after that announcement, I was thrilled to be given the task of helping to lead such an important project. And, right now, I’m excited to share with you that some great strides have been made. In the last six months we’ve consulted with our partners from Pfizer and Novartis, along with other outside experts, to determine the best possibilities for presenting clinical trial eligibility criteria in a way that’s clear and consistent. From these discussions, we were able to form our first target profiles, which were made available to the public in late July through a major update to the LCOI-API. And, we’ve only just begun…

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Infographic: What is ClinicalTrials.gov? 2

ctgov-title

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.

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Helping Patients Connect to Trials by Sharing Better Information 4

"Internet informed patient symposium" by Sebastiaan ter Burg is licensed under CC-BY-SA 2.0

“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.)

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Play Destination Discovery 2

Destination Discovery

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.

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