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.)

One of the things people have told is most lacking from our ClinicalTrials.gov entries is contact information. When people find a trial that looks promising for them, they want to know how they can connect and where they can go to ask questions and get more information. This means that they need access to thorough and accurate contact information for the hospital or clinic where the trial will be taking place.

We’ve listened, and as of July 1,we’ve begun taking steps to add more detailed information about each of our study’s locations and the primary contacts. Currently in the  “Contact and Locations” section for our ClinicalTrials.gov trial entries, patients will find a toll-free number they can call to learn more about who’s conducting the trials and where:

ClinicalTrials contact entry

Figure 1

We’ve realized that, unfortunately, this option often presents an additional, unnecessary barrier to getting them information they need. So, we’ve begun the process of adding specific contact information for each study location in our U.S. trials-based trials. Now when people look at the contact section for some of our trials, they’ll find an additional option under the toll free number—a “Show # Study Locations” drop-down list.  By expanding this list, they will be able to see the name of each institute or hospital participating in the trial along with  its city, state, zip code, primary phone number and the name of the principal investigator:

studylocations

Figure 2

CTgov with DropDown

Figure 3

Currently, five of our trials have been updated on ClinicalTrials.gov with expanded contact information. We’ll continue working through the next few months on updating all of our remaining U.S.-based, open and recruiting trials. Visitors to the ClinicalTrials.gov site will see updates and revisions to our trial entries on a regular and ongoing basis.

By the end of this year, our goal is to have begun adding contact information updates to international trials as well. There are some complicating factors here, as privacy and transparency laws can vary greatly by country; but, we are committed to providing this information where the laws allow, and will continue to work through those issues as best we can.

For those who use our LCOI-API, or who may want to in the future, there’s more good news: This same detailed contact information will be available through the API and will include geocoding to the institute address level. We hope you’ll be able to use this information to build tools that make connecting to clinical trials easier for people who are interested in participating.

We’re pleased with the progress we’ve made so far, but we know that providing better contact information for our clinical trials is just a small piece of the puzzle. We will remain committed to listening to patients and caregivers, and acting upon their ideas for making it easier to find, understand and engage in research studies. As always, we welcome your thoughts and comments. Let us know what you think about this project, and what else you think might be done to improve the information we offer through ClinicalTrials.gov or through our API.

4 comments

  1. Pingback: Helping Patients Connect to Trials by Sharing Better Information | CLINYS – operational excellence for life science companies

  2. Pingback: Infographic: What is ClinicalTrials.gov? « lillycoi

  3. Another important concept is how the clinical trial information is related to community physicians treating specific conditions, not only patients. Educating both groups can yield many benefits.

  4. Pingback: Addressing Patients’ Needs Through Information Technology « lillycoi

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