The NIH’s National Heart, Lung and Blood Institute (NHLBI), with help from WisdomTools and the New England Research Institutes, has created a role playing video game (RPG) called The Paper Kingdom. The game was developed to help ease the fears of kids and their parents and to help them learn more about clinical trials before making a decision about whether to participate in one. You can download the game for Windows or Mac computers from the Children and Clinical Studies section of the NHLBI’s website.
The game starts out like a picture book; a few slides set the scene. You are sent to remind your brother to take his medicine, but you find that he’s not in his room. Suddenly, you are transported into a book titled, The Paper Kingdom, that you find laying on your brother’s floor. His fears about joining a clinical trial have come to life within the book. You must rescue him from them by educating him about clinical trials.
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.
“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.
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…
The following post is by Nicole Sheetz, Advisor of Clinical Development Innovation and Innovation Adoption at Eli Lilly and Company. Nicole is a 15-year pharmaceutical industry professional with broad clinical development experience. She has held leadership positions in clinical project management, data sciences, scientific communications, data disclosure, clinical operations, and competitor intelligence. Nicole currently leads clinical development innovation programs that span various functions, and she is specifically responsible for implementation of innovation projects that are ready for global production and scale-up at Lilly.
I’ve been working in and around clinical trials for most of my career, and I’ve learned that all voices – the patient, the site, and the sponsor – are vital when trying to improve how we conduct research.
Patients’ views are invaluable, as they help us to understand what makes participation in trials important and feasible for them. Clinical research site professionals (investigators, site directors, study coordinators, and pharmacists) are also critical, and they play a very important role in shaping the patients’ clinical trial experience. They serve as the primary bridge between the sponsor’s goals for a trial, the healthcare provider’s care for the patient, and the patient’s needs and wishes. As a result, site professionals are able to share plenty of great insights based on their day-to-day experiences interacting with patients and conducting trials.
I work on Lilly’s Clinical Development Innovation team, and we are focused on reducing the amount of time it takes to bring innovative medicines to patients while maintaining the highest standards of patient safety, ethical practice, and data quality. We know that we cannot reach this goal alone; we need input from the people involved in all facets of the clinical trial process in order to understand what we can improve upon and how. Hearing feedback and suggestions for improvement from site professionals who are “on the ground” every day will surely help us to develop the kinds of solutions that will make a real difference for patients and for the entire clinical development process.