MEDRETE in the Bac Ninh Province of Vietnam by The U.S. Army is licensed under CC-BY-2.0
In our conversations with patients, a theme that emerges again and again is the need for more access to information. People often say they often feel they are left in the dark due to either the deliberate withholding of information, or through unintentional muddying of information through poorly designed forms or websites or through poor communication. All of these make it difficult for them to make informed decisions about their healthcare.
Also, while patients do want and need access to personal data, like their health records and test results, oftentimes it’s simple, logistical information that could make the biggest immediate impact in their day-to-day lives. Driving directions, parking information, what to expect during an appointment, contact information for a specific person you can talk to if you have questions about your appointment before or after—all of these seemingly basic bits of information can be hard for patients to come by without having to search several different websites, make a few phone calls, and spend a lot of their own personal time arranging their visit. And, for those who also trying to manage the symptoms of a chronic illness, jumping through all of these hoops can be especially frustrating.
Our particular focus is on how to give better access to information about clinical trials through technology. Fortunately, it seems that more Health Technology experts are looking for ways they can tackle these issues. There are many good examples within the broader healthcare realm that may help to generate more ideas for developing patient-centered technological resources for clinical trial seekers and participants. One example we were alerted to recently, is a website called UberDok, by eWiz Technology. The site is currently in the Beta testing phase.
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!