From its inception, the mission of our Digital Research Solutions team has been the dissemination of important research findings to target audiences ranging from underserved populations, to providers and policy makers. Reaching these audiences requires a constant evolution in the kinds of media used to convey key messages.
When we started, neither cell phones nor the internet existed and interactive CD-ROM programs were considered state-of-the-art. Today the media landscape has changed dramatically:
Advances in technology, of course, extend beyond digital solutions. The health care system as a whole is being transformed by such tools as virtual doctoring, robotics, personalized medicine, mobile diagnostic tools, wireless in-home monitors, and cloud-based personal health sites.
We embrace such transformations, finding new ways to use emerging technologies to more effectively develop consumer facing tools and disseminate important health-related information. In addition to our broad expertise from clinical trials to policy we have been devoted to producing cutting-edge programs that that meet consumer needs. Several recent examples of work in this area include:
Despite decades of work to improve the safety of research subjects, the term ‘clinical trial’ still conjures frightening images for some people, including children. Excellence in research is essential to our health and quality of life, yet increasing participation in clinical trials remains a challenge. We developed a one hour, broadcast-quality documentary film entitled, If not for Me to address this important issue. The film addresses the important role clinical studies play in improving treatments for childhood illnesses, because over 70% of treatments used with children are never tested in children. Through four different types of clinical studies, the film reveals the emotional challenges that families face in their journeys.
Our team also produces informed consent videos which are easily accessible to participants through private YouTube channels to address the often complex concepts presented in clinical research These videos can either briefly highlight key sections of the consent form that may be difficult to understand, or provide an alternative way to ingest the lengthy and complex written form. They can also provide visual information about devices or procedures and can connect participants with subject experts or study leaders.
It is often difficult to articulate in words the interaction between a provider and a patient. Whether training or illustrating a concept for a study, seeing is often more effective than reading. Our video and film expertise has been used to create video case-study vignettes to be used as part of training, or as an intervention for a randomized trial. For example, in collaboration with the Veterans Health Administration, we produced web-based video examples of appropriate counseling for PTSD using cognitive behavioral therapy.
Web-based courses (with continuing education) has been a core strength of our team of experts. Working with internationally-recognized clinical experts and leaders in continuing education (for example, Boston University School of Medicine Continuing Medical Education) our goal has been to deliver high-quality continuing education programs. Collaborating with clinical experts and a leader in CME accreditation, our continuing education programs have helped primary care providers, pediatricians, social workers and nurse practitioners better understand challenging issue around heart disease, diabetes, pain, sleep and other conditions.
Our video game titled Paper Kingdom was developed to dispel the myths and misconceptions that surround pediatric clinical trial participation. Paper Kingdom is an adventure game where everyone and everything is made out of paper. The player searches the Paper Kingdom for his/her “little brother” who is traveling throughout the kingdom, expressing his fears about clinical trials. As the player explores, he or she learns how to conquer fears and find his or her way safely back home. This video game is accessible through: http://childrenandclinicalstudies.org/