By Gwendolyn Quinn, Ph.D.,
H.Lee Moffitt Cancer Center & Research Institute
Communication through visual research has traditionally been used in disciplines such as anthropology and sociology. However, it is becoming increasingly popular in the social and health science arena. Visual displays, including photography and video, have been incorporated into research in a variety of ways including using photographs to elicit discussions about specific topics. Perhaps more importantly, visuals in the health sciences play a key role in reminding health care professionals that real people are the focus. By including visual displays, in conjunction with patient interviews, the photo essay is able to generate and blend powerful information and images that provide a richer, more complete portrayal of the context of a patient's experience. It is the difference between telling a story and showing the story. The potential for impact is far greater in the showing of a story.
The motivation for the "Faces of Lung Cancer" project sprang from the success we had using the photo-essay to show patient experiences in various health related contexts. Our first attempt was a highly successful project, "Sisters of Courage", which portrayed the lives of breast and cervical cancer survivors. Funded by the Florida Department of Health,the original audience for that book was newly diagnosed women,and the project was intended to create a message of hope. However, the success of the project went far beyond touching the lives of women diagnosed with cancer. Health care professionals,educators,and even legislators took notice too, and the power of the photographs translated into greater attention on service delivery and increasing state funding for preventive services.
The achievements accomplished through the "Sisters of Courage" book gave us the idea to apply this approach to a totally different area -- prenatal care.As a way to launch a new project to improve the culture of prenatal care among underserved and minority women, The Lawton and Rhea Chiles Center for Healthy Mothers and Babies, along with Beth Reynolds,developed a photo-essay called "Missed Opportunities." The audience for this project was obstetric and gynecological health care providers, who were presented with the essays and photos of women sharing their prenatal care experiences. None of the women in the project would have labeled their experiences as negative, but rather a series of frustrating attempts to get appointments or have questions answered in a system that was not friendly to the context of their lives. However, when providers viewed the essays it was eye-opening to them about the ways in which some women can easily "fall through the cracks" of the health care system. The "Missed Opportunities" project became a thriving project to launch a new initiative for changing the culture of care.
Our next joint endeavour focused on another aspect of women's health -- Folic Acid. In a slight variation of the photo-essay concept, we created a photo-novella to show the story of the importance of taking folic acid before conception to help prevent birth defects. After a year of working together with Hispanic women, it became clear that visual images would be most effective in communicating this important health message. Once again we called on Beth to photograph the sequence of events in a story called "The Three Sisters/Las Tres Hermanas." This is an on-going enterprise, funded by the March of Dimes, showing great promise in encouraging women to take a multi-vitamin with folic acid during their childbearing years.
"Faces of Lung Cancer" is another attempt to give a voice and a face to patients navigating the health care system.One of the goals of this project is to increase awareness of clinical trials. Our research with this population showed many newly diagnosed patients misunderstand the purpose of a trial and often feared being offered a trial.
With this new project,we wish to communicate a message of hope to new patients. Hope doesn't always mean the promise of remission or cure, but rather the peace of mind that a person is doing his or her best and making the best decisions for their own unique situation. The patients, caregivers, and health care professionals depicted in "Faces of Lung Cancer" don't just tell us about hope,they show it.
It has been both a privilege and delight to be allowed into the private lives of these patients. As a researcher, I am filled with new knowledge and possibilities while at the same time,as a person I am, forever changed by these faces and stories.