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Five Questions for Pat Agre

By Lisa Gualtieri / May 2009

TYPE: INTERVIEW
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Patricia Agre has been director of Patient Education at Memorial Sloan-Kettering Cancer Center in New York City since 1994. She is a former registered nurse and respected photographer, who incorporated those skills into a career overseeing the creation and development of educations tools for cancer patients. She holds a master's of science in radio/television from Brooklyn College and a doctorate in health education from Teachers College at Columbia University. Here, she talks to eLearn's editor-in-chief Lisa Neal Gualtieri about her experiences producing comprehensive multimedia health care education tools, including the lessons she gleaned when needing those tools to learn more about her own cancer diagnosis.

Lisa Neal Gualtieri: How did you get started in patient education?

Pat Agre: I had an unusual career trajectory for patient education. I left nursing and became a full-time mom in the mid-1960s. Though I loved being there to get my children off to school and hug them again at 3 p.m., I was bored and restless in between. One day, I picked up my husband's camera, fell in love with photography, and within a year was working professionally—doing mostly children's books and portraits. Two books took me back into hospitals. The first was Jeff's Hospital Book about a young boy who has surgery for strabismus (more commonly known as crossed-eyes). Later I followed two pediatric interns through their grueling year for a book called The Interns. I loved being in the hospital again, even at 3 a.m. And after a bit of soul searching, I completed a nurse refresher course, went back to work in nursing, and began a master's degree in television with the intent of combining two media fields to focus on patient education. As luck (Irish) would have it, within weeks of finishing my degree, Memorial Sloan-Kettering Cancer Center (MSKCC) was looking for someone to head the patient education program and was putting in its first patient education television channel. Other than my photography and video skills, I had only my nursing as preparation for this new role. I quickly went on to get a doctorate in health education.

LNG: Tell me about your experiences developing CD-ROMs. Were you part of a team and what was your role?

PA: The CD-ROM program came from my belief that we should make it easy for cancer patients to learn as much about their cancer as possible. The first two CDs led to a wonderful collaboration with Jane Pirone. I met her when I took a course she taught in computer animation. I asked if she would be interested in doing a prototype with me for very little money. I was responsible for all the writing and research, which was easy because the doctors and nurses and other health care staff at MSKCC are extraordinarily knowledgeable, accessible, and helpful. I would write; they would edit. With the content complete, Jane would begin her work on putting it together. Initially, our learning curve was steep. We did a lot of pilot testing and watching end users and, ultimately, were convinced that our approach was meeting patients' needs and was easy for even novice computer users to navigate. We did 13 CDs before funding became difficult to come by and the effort was let go.

LNG: Are the CD-ROMs still in use or is the material Web-based now? What is being done with text vs. audio vs. video? Which works best in your opinion and why?

PA: Most are not still in use. The technology changes very quickly and within only a few years, computer systems no longer recognize older operating systems. The Esophageal Cancer program has been taken over by a patient volunteer who raised the money for its update. He gives it to all new esophageal cancer patients at MSKCC. He has also started a website.

By the time we finished, our programs combined medical illustrations, photographs, video, animation, narration, and simple text. All worked well. I am always too much in a hurry to listen to the narration, so I typically turned it off. However, most people really liked it. The animation showed patients what would happen inside and during the surgery. We used photographs for interviews with patients and to provide some visual interest for "nice" to know information on insurance issues and similar topics that are not about cancer, but are helpful to cancer patients. We narrated everything except the chemotherapy fact cards and side-effects sections. Video sections showed techniques for self-care activities such as using an incentive spirometer to keep the lungs open after surgery.

I'm aware of only one company still doing CD-ROMS for cancer-patient education and they are located in Canada. They are fabulous.

LNG: What are the other types of educational resources you provide to cancer patients? What feedback do you get from them? (If you feel comfortable, would you say something as well about your own experience as a cancer patient?)

PA: We have over 650 booklets and fact cards. These are generally not about a specific cancer. Rather they help patients understand tests, treatments, side-effect management, and general information such as advance directives, sexual health issues, diabetes related to cancer treatment, and many others. We also have many videos to reinforce self-care skills that patients must do at home.

We have recently done some work with photo maps to make it easier for patients to complete self-care activities. For example, we photographed a nurse's hands as she put on sterile gloves and found that patients could do it easily by just following the steps in the photos.

I am proud that all of our materials are written at a 6th grade reading level, which makes them accessible even for basic readers. It was a two-year effort to revise all of them, but it was well worth it. When I finally understood the literacy issue in this country, I was unhappy that we were perhaps providing print materials that some patients could not read.

I would never wish cancer on anyone, but when I was diagnosed with breast cancer, I suddenly could look at our materials from the other side of the desk. It helped me think differently about what we included. I remember having a nuclear scan and thinking, "I had no idea I would have to lie here with my arm over my head for so long." The technician had to count down for me so I could get through it. Now, I try to make sure someone in the office observes new procedures before we write about them. Even the nurses who do the teaching have often not actually been to a procedure.

LNG: Cancer patients need information to increase their understanding and help them to make crucial decisions. What best practices have you learned from your experiences providing cancer patients with educational materials that will help others who are developing materials for people with less critical needs?

PA: Each of us approaches learning in our own way. Some cancer patients (like me) want to know everything they can. Others want only to be told what they must know. Perhaps the most important thing I've learned is that almost no one can retain everything they are taught in the beginning days of their cancer experience. That said it is still important to make sure we meet the needs of both kinds of learners. For the person who wants to know everything, we have to help them organize their learning is a way that makes it accessible in both short- and long-term memory and give them resources to keep learning on their own. One way to do this is by providing links to reliable websites. The best nurses do their teaching in an organized way and accompany it with lots of empathy. They stop frequently and make sure the patient is following and understands. They project calm and focus intently on answering questions and making patients feel comfortable asking whatever they want. They use the print materials to reinforce their teaching. Many highlight important sections and will continually review information.

Comments

  • Thu, 31 May 2007
    Post by Paz de Torres

    Totally agree with your statements, the issue is that on paper we always get agreeing on, but in reality the how-to´s are blocking to make it happen. Education sector is isolated to realities, such as productivity, sustainable investments and effective quality standards. Foundations working in this arena know too well this. And we still haven´t found the key to breakthrough and get to next level. It would be important to make society aware of this. Despite what Foudnations can say, it is from other institutions as well where the voices must come.

  • Thu, 16 Nov 2006
    Post by Edward Flowers

    Person-person learning, especially in the beginning grades, is extremely important in social skills development. It seems to me that the teacher salaries in the lower grades should be the highest of all. Technology has an important part at all levels, but it must not hinder social development. Middle school children gave, nearly unanimously, these 3 things as critically important: Responsibility Respect Recognition.

  • Mon, 30 Oct 2006
    Post by Lisa Neal

    Fascinating column, Kay. I just saw that The Federation of American Scientists released a report "Harnessing the power of video games for learning" - how does this fit in to your perspective on technology and learning?