Despite the to-do list on the fridge and Post-it notes littering our desk drawers, many of the tasks we mean to do remain undone. Sure, we paid the electric bill, but maybe let another month pass without completing an organ-donation card. This month millions of Americans will continue forgetting to fill out that card, and about 20 people will die today because of it.
Organ donation is not a controversial issue. National surveys and census research report that anywhere from 85-90 percent of Americans are for organ donation, though just 25-30 percent have filled out a donor card. Today, there are more than 100,000 people on waiting lists for organs. These are people hoping to be one of the roughly 78 who everyday receive a transplant thanks to those who spent a few moments to check a box and sign their name.
“One of the biggest problems is that signing an organ-donation card can be put off for 60 years, until you die,” said Eusebio Alvaro, a research professor at CGU’s School of Behavioral and Organizational Sciences (SBOS). “There is no intrinsic motivation to do it other than you’ll momentarily feel good about yourself – which is great – but it’s just not that important in people’s day-to-day lives.”
Alvaro and fellow SBOS Research Professor Jason Siegel are behavioral psychologists studying – and reconciling – the disparity between people’s attitudes toward donation and their lack of action.
This work began back in 1999, when Alvaro and Siegel were still graduate students at the University of Arizona. Their long-standing collaboration with Sara Pace Jones at the Donor Network of Arizona resulted in the award of a multi-year grant from the Health Resources and Services Administration (HRSA) – an agency of the United States Department of Health and Human Services – to discover the causes of and solutions to low organ-donation sign-up.
One of the things they’ve discovered is that this disparity is not just attributable to procrastination or forgetfulness. “There are a lot of false beliefs out there,” said Siegel. “And the media is not very helpful in this regard. Assertions such as a doctor may let you die early or that you can’t have an open-casket funeral are completely false, but people still believe and transmit them. Or people are uncertain about the process; they have concerns about how it all works. So any time you have something where people aren’t very motivated coupled with these fears and concerns, the behavior is rarely going to happen. What we’ve had to do is figure out ways to provide behavioral supports, to get people to have positive attitudes so they’ll sign donor cards. This is where the bulk of our work has been focused, both the successes and the failures.”
Working with their long-term partners at the Donor Network of Arizona, Alvaro and Siegel have done everything from producing media campaigns for TV and radio to organizing community functions; they’ve even set up booths at swap meets and an NBA game – all with varying levels of success. At a Phoenix Suns game, for instance, they got only 10 out of 19,000 spectators to fill out organ-donation cards. Still, they’ve learned a great deal from their years of mixed results. After conducting numerous focus groups, they have developed what they call “probably our biggest success,” the IIFF model.
The evolution of the IIFF model began with a study at a town-hall meeting they set up in which a panel of donor specialists talked for an hour and everyone in the audience received a donor card. The cards were either collected at the end or people were urged to mail them in. Forty percent of the group whose cards were collected signed up, while only 10 percent mailed in completed forms.
“To us that was a huge aha moment. This became the first and most important component of the IIFF model. We realized that we have to take it out of people’s hands, because they’re so unmotivated that if we don’t get them when they’re actively engaged, they’re never going to send anything in. We then did some more focus groups to see if this was the case, and we started getting 50 to 60 percent sign-up,” said Siegel.
IIFF stands for immediate opportunity, information, focused engagement, and favorable activation. As Siegel remarked: “If you do these things, people will register . . . for lack of a better movie quote.” This means that if potential donors are first given the opportunity to register immediately in a motivational context (after a film, focus group, or discussion); second, given correct information (particularly on eligibility); third, have their attention actively focused on the issues surrounding organ donation; and last, have a favorable attitude about the outcome (for instance, thinking about saving a life rather than their own death): people will register.
This model is primarily targeted at those whom Alvaro and Siegel call “passive positives,” people who want to donate, but have yet to sign up.
“The people who are against organ donation – that 10 to 20 percent – we have almost nothing to do with,” said Siegel. “We’re focused on getting the passive positives to register, and that’s where the IIFF model is most effective.”
Though most of their work is directed at non-living organ donation, the pair also work in the living donation field as well. “Here the issue to overcome is information,” said Alvaro. “For so many people, the knowledge just isn’t there, the process is a mystery to them. They don’t know how to have conversations with family or friends. We’re trying to give them the necessary skills so they can have this kind of difficult conversation.”
Before getting involved in organ donation, Alvaro and Siegel both worked in the television and film industry. “We both decided that we wanted to use our media talents to help people in the health realm, rather than work in the commercial industry and convince people to buy more soap or else feel miserable about themselves. That eventually led both of us here, to CGU,” said Siegel.
It was especially CGU’s commitment to transdisciplinarity that was of interest to Alvaro and Siegel. “CGU has been a perfect home for our research because organ donation brings into play a lot of different fields,” Siegel explained. Aside from working with different disciplines within SBOS like cognitive and social psychology, the pair also works with CGU’s School of Community and Global Health and School of Educational Studies. “We have great relationships with people from all these schools. And, when you look at it, the problems of organ donation are not best served by just one academic approach. With a good intersection of different thinkers we get the programs that are going to be effective,” concluded Siegel.
Working within SBOS, though, the two are comfortably at home. They credit SBOS faculty with being incredibly welcoming, with some – such as Professor William Crano, Emeritus Professor Stuart Oskamp, and Dean Stewart Donaldson – acting as mentors.
According to Crano, who has worked especially close with the pair as an advisor: “This is applied psychology at its best. The work is not just scientifically sound, but can also make a major contribution to people who are suffering.”
“They are rising stars in the field of applied psychological science,” said Donaldson. “Their contributions to CGU and our school have been extraordinary in terms of mentoring and publishing with students, and in securing extramural funding to support students and cutting edge research.”
Alvaro and Siegel also just published a book they edited (and were contributors to) through the Claremont Applied Social Psychology Series, Understanding Organ Donation: Applied Behavioral Science Perspectives. The content was produced from SBOS’s 2007 Claremont Symposium on Applied Social Psychology, which brought leading scholars in the field of organ donation to CGU.
“It was a wonderful conference,” said Alvaro. “We got to know all these scholars really well and they all contributed to the book. It’s created a nice little community in the field and we really couldn’t have done this without the help of CGU.”
Another useful CGU resource is its ready supply of eager graduate students. “They’re involved in every aspect,” said Siegel. “Both in the research and out in the field. We haven’t put out a publication since we’ve been here that doesn’t include students on it. Whether it’s data analysis, coming up with ideas, doing research, they are participating with us every step of the way. We use our status in the donor field to give the students real-world experience, and in exchange we get their dedication and hard work.”
And there is plenty of hard work left to do. Outside CGU, Alvaro and Siegel (and many of their students) spend a good deal of time with procurement organizations, transplant centers, and hospitals sharing what they’ve learned, while also learning from nurses, doctors, and surgeons what problems persist.
“Everyday 20 people die: these are someone’s parents, someone’s kids, someone’s loved ones who don’t have to die,” said Siegel. “We feel very lucky because we’re pretty sure that our work is going to save a life or two, hopefully a lot more. And again, it’s not about the people who are against organ donation; we’re not interested in changing anyone’s opinion. If you don’t like donation, fine; but if you do – to these people we ask: please take the steps to sign up because there is almost no doubt about it, you can save a life.”