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.
UberDok attempts to meet several patient needs in a one-stop, online healthcare shop. It allows you to store your personal health information, find education materials about diseases and conditions, and enter your symptoms to get a list of possible diagnoses. One of the most unique features, is one that it allows you to check wait times at your nearest emergency rooms, urgent care centers, and doctor’s offices so that you can plan accordingly. It even can allow you, in some cases, to make appointments with these service providers, so that you can wait in your home, as opposed to the hospital waiting room. You can also print, fill out, and sign paper work before you arrive.
Through our own ongoing work, we hope to provide information to patients that will make it easier for them to find and participate in clinical trials. We also hope to provide better resources for technologists, in order to make it easier for them to build websites and apps like UberDok for the clinical research space. We’ve taken some small steps in the direction, by adding more detailed contact information to our entries on ClinicalTrials.gov, and by working with other pharmaceutical companies to present the eligibility criteria for clinical trials more consistently through our LCOI-API. (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.)There’s still much more work to be done, and we believe that with the help of empowered patients and skilled IT professionals, we can help improve access to healthcare options and clinical trials for every one.
What are some other ways that technology might be able to help patients find clinical trials? Let us know in the comments below, or send us a tweet.