For the past 12 months, two University of Memphis organizations have teamed with St. Jude Children's Research Hospital to develop an interactive tool to aid parents of children with cancer.
Now, with an $83,000 grant from the Greenwall Foundation, they can finish the work they started.
The U of M's Center for Multimedia Arts (CMA) and the Center for the Study of Rhetoric and Applied Communication (CSRAC) are developing a tool that will aid parents with the informed consent process that they must understand before their child will receive treatment at St. Jude.
The grant will fund the entire informed consent project.
CMA director Michael Schmidt, who has worked closely with the project since it began a year ago, said the goal of the project is simple.
"What we're trying to do is create a tool that moves with the parents through the entire treatment and recovery process," Schmidt said. "And that is something that needs to be digital and interactive, updatable and tailored to the needs of the parents."
Currently, the partners - along with a Canada-based company called Flick Software - are working on a prototype to describe an experimental antibody treatment that is supposed to attack cancer cells without compromising the child's system as much as radiation.
For this and other treatments, parents currently receive a 30 page "informed consent" document outlining the process. If successful, the interactive tool would replace the document and add to its scope.
"I think all partners involved recognize that if this is successful, we really have the responsibility to take this forward into the medical field," Schmidt said. "It could very well change how people learn about diseases."
According to Schmidt, the project will loosely encompass two dimensions: informational and experiential.
The informational dimension of the interactive tool will include everything found in the 30 page informed consent document and much more.
"One of the things the doctors are interested in for some of the patients is to be able to read the research behind (the treatment)," Schmidt said. "That isn't something you're going to get much of in a 30 page document."
While the tool will include a larger amount of information, transforming volumes of data could make for a difficult process.
"It's going to be an interesting challenge because you've got a lot of dry, verbal information that we're going to have to try to make into ...a visual and interactive medium," Schmidt said.
For example, the tool could include a graphical depiction of how a specific cancer grows in the body and how the prescribed treatment works.
The tool's experiential dimension will eventually include a digital scrapbook, which will allow parents to access a database of images and notes from parents who have already taken children through the same illness.
These elements are just a few of the tool's possible capabilities.
"You'll have images, and you can have video, and you can have audio," Schmidt said. "And you can have it all on a device that's not as small as a handheld and not as big as a tablet PC."
Although a prototype of the device won't be developed until "the middle of the school year," much of the research is already taking shape.
The involved parties have put together focus groups of parents and patients and questionnaires have been distributed highlighting their experiences with the current informed consent process.
Schmidt has also worked with them to develop an initial collection of pictures and graphics, which will help him in constructing the design of the informed consent program.
All of this information will take the project closer to its completion.
"We'll take what I learned visually, what we learned verbally from the questions and what (St. Jude Hematologist and Oncologist) Dr. (Raymond) Barfield and St. Jude have for us legally that has to be in this tool, and we'll start to ... see from that what goes where," Schmidt said.
Eventually, the prototype will be field tested by parents who agree to forgo the original process for this experimental one and the efficiency of the project will be assessed.
Yet even if the conclusion of this project is months or years away, Schmidt said he is excited to make it work.
"We've identified a need of great importance and our university and our community (St. Jude) have the capacity to really help make a difference in the quality of life for people who are going through a very difficult event," he said. "That's what really keeps me motivated and passionate about doing this."
