Found in translation
UF’s Clinical and Translational Science Institute is forging unusual partnerships that could change health care
By April Frawley Birdwell
The premise sounds simple. For $100 — and a test tube full of spit — the website promises to look into the genetic crystal ball and reveal your chances for developing diabetes, Alzheimer’s disease and a slew of other conditions. Even baldness. Or what a child’s IQ might be, revealed in one quick cheek swab
It’s an enticing prospect and entirely believable in a world where DNA is a household name. It’s also misleading.
“These websites are way beyond where the science is right now,” says Debbie Treise, Ph.D, a researcher in the UF College of Journalism and Communications. “People get these results back, and they don’t understand them. The research shows people are making horrible decisions based on these tests. Whether or not they get married, whether or not they have children.”
As part of a Clinical and Translational Science Institute project to understand more about companies offering direct-to-consumer genetic testing, Treise and fellow communications researcher Norman Lewis, Ph.D., teamed with experts in the College of Medicine. They conducted a content analysis study, reviewing the sites to find out everything from what sorts of promises they made to customers and whether they offered genetic counseling to how they conducted their tests and whether the industry was regulated. Their findings reveal a landscape that falls woefully short of disclosing the information required for consumers to fully understand the validity and utility of the tests being sold.
“It turned out (these sites) failed utterly,” says Stephen Hsu, M.D., Ph.D., the R. Glenn Davis associate professor of clinical and translational medicine, and a molecular geneticist who worked on the project. “In some sense, you cannot escape your genetics, but how your genes get expressed depends on so may other factors. At each turn, we are discovering increasing levels of complexity that are independent of the DNA sequence and clearly argue against strict genetic determinism. Card-carrying molecular geneticists are appalled by (online services offering direct-to-consumer genetic profiling) based on a very simplistic understanding of the role of genetic variation in predicting with any certainty complex human traits such as IQ or risk for heart disease. Yet it’s a huge cottage industry and completely unregulated.”
For patients, the extent to which they encounter information about these companies online or in the news is likely to affect whether and how they consider genetic testing options in a clinical or research setting — which, for example, might help determine the safest and most effective medication or dosage for a patient.
The study, which is in press for publication in the journal New Genetics & Society, is just one of the ways Treise and colleagues in the College of Journalism and Communications are using their expertise in mass media to make a difference in health care and science as part of the CTSI. The partnership may seem unusual — its experts have vastly different areas of expertise and methodologies — but Hsu says it is these differences that make the collaboration potentially revolutionary. It also makes UF unique. Of the 60 institutions who have received the Clinical and Translational Science Award from the National Institutes of Health’s National Center for Research Resources, UF is the only one with a communications college on board at the program level.
Like epidemiology, communications research is not the type of science that can be conducted in a laboratory, there are no white coats and beakers, but it is just as crucial when it comes to bringing scientific discoveries to the people who need them, says Hsu. And that is what the CTSI is all about.
“Translating what we learn from research into actual health advances is a long and complicated process. At nearly every turn, that process is affected by our ability to inform and motivate others — whether colleagues, patients, policymakers or communities,” says David Nelson, M.D., director of the UF CTSI. “Collaborating with health communication researchers presents an enormous opportunity to better understand and navigate these real-world dynamics.”
Making the connection
Until the CTSI was established in 2008, finding collaborators in the Health Science Center wasn’t always easy for Treise and other communications researchers. In some ways, it still isn’t, though they are making progress through the CTSI.
Part of the challenge has been getting physicians and health scientists to understand not only how communications research can enhance their own studies, but also that the College of Journalism and Communications has researchers.
“Typically what happens is they say we need a press release or public service announcement, without thinking about how we should have been involved on the research part of it,” Treise says. “There is so much research that goes on to craft the appropriate message.”
Ronald Shorr, M.D., found Treise when he was searching for information on health communication at UF prior to joining the university and the Malcom Randall Veterans Affairs Medical Center in 2007. In the Geriatric Research, Education and Clinical Center, Shorr and colleagues Rebecca J. Beyth, M.D. M.Sc., and Connie Uphold, Ph.D., A.R.N.P., are focused on finding new ways to improve patient care, particularly helping people become more informed consumers of health care. To them, teaming with Treise was a logical step — and has already yielded results.
“The future of research is going to depend on these unique combinations of points of view. Team science,” says Shorr, director of GRECC. “The fact is that the traditional science has only taken us so far, and study after study has shown people are not receiving optimal care. All the lab work in the world is not going to solve that problem.”
Shorr has a term for Treise and her fellow communications researchers. He calls them “the basic scientists of persuasion.” And he Beyth and Uphold hope that incorporating the strategies and skills of advertising and mass media into their own work will help change how patients approach health care.
“A lot of people know much more from Consumer Reports about what widescreen TV they should get versus what medicine they should be on,” Beyth says. “They need to be informed consumers.”
The team’s first project with Treise involved ways to educate patients with the cardiovascular disease atrial fibrillation about the benefits of taking the drug warfarin, which can reduce stroke risk by two-thirds. But first they needed to know why patients weren’t taking it already and how to best reach out to them and their doctors. The end product was a video they plan to test soon.
At a time when patients are exposed to messages from all directions and doctors have less time to communicate one-on-one, coming up with new ways to provide accurate information in an understandable way is more important than ever, Beyth says.
“One of the skills mass communication professionals have to have is translation — that is, we’ve learned how to gather information from one group, which often is speaking in a ‘language’ only that group’s members can fully understand, and then to translate that information into language tailored for the specific audiences with whom we’re communicating,” Treise says.
As part of her doctoral work, College of Journalism and Communications student Yukari Takata, M.P.H., is working with the CTSI Biorepository to study the informed consent process. The Biorepository collects tissue samples to be used in research, but patients must give consent to be part of a study first (for more on the Biorepository, click here). Takata is working with the CTSI to enhance that process and help patients more fully and easily understand their consent and make an informed decision.
“My research looks at how patients make decisions and how they are influenced, especially with informed consent for research and procedures,” Takata says. “We know if someone is wearing a lab coat they are seen as more credible and people are more likely to say ‘OK.’ That can be a problem for decision-making, because they might say ‘OK doc, do whatever you want.’”
As part of her project, Takata aims to look at how user reviews and recommendations can affect this process. Her research has shown that an online expert review outweighs the review of an average person, like the kind you see when you are shopping on Amazon. But when the number of user opinions start to mount, climbing between 100 and 300, the scale tips.
“Taking that ‘collective intelligence’ concept into the informed consent process, here is this long document, what happens if we have different users discover and share parts they thought were important?” Takata says. “We are trying to see the positive side of user influence. Even if a lot of people highlight something, will people pay more attention and make a better, more informed decision?”
And there are far more prospects for collaboration between communications and the health sciences, Treise says. The college has the country’s only public interest communications program, which health science researchers could tap into. Also, Treise says the addition of newsroom and strategic communications laboratories at the College of Journalism and Communications will offer a place for new communications research concepts to be tested.
“There are all kinds of people here who are interested in the communications functions of health and science,” she says.
Treise’s collaborator Hsu, sees collaborations between disciplines like communications and medicine as being beyond multidisciplinary, thinking of them instead as “transdisciplinary.”
“We have to be more holistic and see how different and seemingly unrelated disciplines can come together to create new disciplines with new capabilities. We need all these skillsets. That kind of perspective and paradigm is being explored now but somewhat cautiously,” he says. “It is at the interface between science and society. For me it has brought me into domains of creative activity I otherwise would not have had if Debbie had not invited me to join one of her collaborate research efforts.”
For additional information on CTSI resources, click here.