Introduction to the Project
Informed consent for participation in research is considered a cornerstone of research ethics. Since the Nuremberg Code, informed consent of participants has been a central tenet of every subsequent code of research ethics. Despite the unquestioned importance of informed consent in the research enterprise, the practice of obtaining consent still remains a matter of concern. In the United States, federal regulations governing research with human participants dictate the specific content required for the informed consent process, but provide little guidance regarding “how” consent should be obtained and fail to address the practical issues that clinicians/researchers encounter as they engage families and research participants.
Traditional curricula and training materials in research ethics focus on the content of informed consent, but rarely speak to the many factors that make an informed consent process both ethical and valuable for families. With this in mind, Seattle Children’s Research Institute created two films — one with a specific focus on research and the second with a focus on communication with families with limited English proficiency. These films take a fresh approach to the traditional and often dreaded “training videos,” and while not intended to represent reality, they are meant to be an entertaining catalyst for discussion about serious and important topics relevant to staff who work with families and research participants.
Using humor to present the challenges that research teams and medical staff members encounter when obtaining informed consent, Paging Dr. Peter focuses on the research context and The Journey of Captain Nat centers on communication issues and specifically looks at families with limited English proficiency. Both films use voice over, surreal situations and cleverly written dialogue to entertain, educate and connect with the audience. Each film is approximately 15 minutes in length.
Facilitator's guides for educational films
Accompanying each film is a facilitator’s guide meant to provide a brief overview of each film and assist a designated facilitator in presenting the film to a group. The guides include a brief overview and background, educational goals for presenting the film and facilitating a discussion, synopsis of the film, suggested reading for the facilitator and an outline of discussion topics followed by questions to aid discussions of the topic. Each discussion question is followed by additional information that the facilitator may wish to include in the conversation with the audience.
Our hope is that students, research and medical faculty and staff, and anyone involved in medical care will enjoy the humor and take something away to improve their own communication with families about clinical care and research participation.
Halle Showalter Salas
Telly Awards
The Telly Awards "honor the very best local, regional and cable television commercials and programs, as well as the finest video and film productions, and work created for the Web. The 29th Annual Telly Awards received over 14,000 entries from all 50 states and five continents."
Paging Dr. Peter won first place in the Employee Communication category.
The Journey of Captain Nat won first place in the Education (For Academic Use) category.
Paging Dr. Peter
Audience: Faculty and staff that present research information to families and potential participants
Facilitator's Guide: Paging Dr. Peter facilitator's guide (PDF)
Watch the video
Content:
The film contains three major educational goals:
Review factors that negatively and positively influence the informed consent process
Understand how content, context, and communication can affect the informed consent process
Describe how word selection can affect/bias understanding of a research study
The main character in the film, Dr. Peter, is a clinician/researcher working at County Generic General Hospital. He and his colleagues Reese and Francis approach families regarding participation in a variety of studies. Each provider struggles with three main elements inherent in the informed consent process:
Content
Context
Communication
Always in a hurry, Dr. Peter is interested in having potential participants enroll in his study, and wants to waste as little time as possible in the process. His mannerisms and loaded language may ultimately achieve the goal of enrollment, but fail to respect the needs of families. He seems more concerned about persuading rather than informing.
Reese struggles with controlling the environment in which she presents research information. Multiple distractions interfere with effective communication, and impair participant/family understanding while frustrating all parties involved.
Tending to incorporate medical jargon into the process of informing families, Francis, has little patience for those who don’t understand his word choice or who might have questions.
Seeing how the three are struggling, Missy, the head nurse, advises them to step into the shoes of the participants. With help from Dr. Elias she aids the clinicians in exploring what their participants might be feeling. This leads to a change in their perspectives and alters their approach to presenting research information with potential participants and families.
The Journey of Captain Nat
Audience: Faculty and staff that work with families
Facilitator's Guide: The Journey of Captain Nat facilitator's guide (PDF)
Watch the video
Content:
Effective communication is one of the most pressing challenges in healthcare and research arenas. Many factors affect communication. The Journey of Captain Nat focuses on three educational goals:
Recognizing critical aspects that influence communication and that are integral to improving provider/researcher and family interactions
Creating an awareness of issues surrounding working with interpreters and various policies that may affect families participating in research and engaging healthcare
Exploration of one’s own personal biases and comfort levels with cultural and language differences
The Journey of Captain Nat asks the audience to assume a broader perspective when communicating with families, especially those with limited English proficiency. County Generic General Hospital provides the background to this mockumentary that focuses on the experience of a family with limited English proficiency in a hospital setting.
Nat is a swarthy, weathered sea captain whose only form of communication is semaphore — a system for conveying information at a distance by means of visual signals with hand-held flags. Nat seeks medical care for his young grandson, Jonah. A documentary film crew, intent on following one of the few remaining semaphore-speaking sea captains, joins him and his grandson on their journey to a hospital.
Seeing Captain Nat’s point of view throughout the film, the audience witnesses the potentially overwhelming situations he, Jonah and his inexperienced semaphore interpreter find themselves in. The film focuses on communication issues that are applicable to working with all families as they encounter the medical world.