About Susan E. Morgan, Ph.D.: Susan E. Morgan is Vice Dean for Research and Creative Activity as well as Professor in the School of Communication at the University of Miami, where she has also served as Associate Provost for Research Development and Strategy, Associate Dean for Research, and Director of the Center for Communication, Culture and Change. Dr. Morgan’s research in health communication focuses on the design and evaluation of health campaigns. Her current work focuses on clinical trial communication, while her previous grant-funded work centered on organ donation. Dr. Morgan is a prolific scholar who has published research in leading journals including Communication Monographs and Journal of Health Communication, and as chapters in edited collections. She is also co-author of the book From Numbers to Words: Reporting Statistical Results for the Social Sciences, with Tom Reichert and Tyler R. Harrison.
In 2015, Dr. Morgan was recognized with the Distinguished Health Communication Scholar Award from the National Communication Association. Dr. Morgan’s research has been funded by grants from the Department of Health and Human Services, the National Institute on Drug Abuse, the National Institute for Occupational Safety and Health, and more. She received her Ph.D. and M.A. in Communication from the University of Arizona and her B.A. in Communication from the University of Massachusetts. Prior to working at the University of Miami, Dr. Morgan was a professor at Purdue University and Rutgers University.
[MastersinCommunications.com] May we have an overview of your academic and professional background? How did you become interested in health campaigns, health communication, and the impact of media on health promotion?
[Dr. Susan E. Morgan] I graduated from the University of Massachusetts and during that time HIV and AIDS was on the rise. I became an HIV and AIDS activist, and eventually a certified sexual education provider through the Red Cross during graduate school. I was a co-founding member of ACT-UP Western Massachusetts. ACT-UP, the AIDS Coalition to Unleash Power, was a very “in your face” activist group. At the time, people were getting sick and dying and it was being ignored by the general population and the government. There weren’t the resources, and there wasn’t the education. A lot of people were dying. That stirred a lot of passion for me and a lot of commitment to trying to make the world better and more just.
During my undergraduate education, I was exposed to the work of Susan Sontag and read AIDS and its Metaphors and Illness as a Metaphor, and that shaped me profoundly. It was through her work that I was able to more clearly understand the role of the mass media in generating public hysteria around human beings who had a deadly disease. That work had an enduring impact on me, not just in shaping my awareness, but in helping me become a more careful message designer. I consider myself primarily someone who works in message design, and it’s made me consider unintended consequences of public communication.
When I was at the University of Arizona I became a research assistant on a grant funded project to do HIV and AIDS education in grades 3-8 in the parochial school system across Arizona and New Mexico. As part of that, I helped to create an interactive educational component that was delivered via computer. It was like a make-your-own-adventure sort of intervention. This being the 90s, it was pretty exciting and innovative. This interview question made me think, “Oh my gosh, I’m still doing the exact same thing.” [laughs] The more things change the more they say the same.
One of the things that project showed me is that it’s not just about educating individuals about a health issue. Each person lives in a complex social ecosystem. Without intervening at a community level or a public level, individual education doesn’t have a whole lot of hope. You have to do interventions that are larger than at the individual level.
As I became interested in organ donation and in clinical trial communication, I realized that these topics have something in common, which is that they’re not very well understood by the general public. These are all things that are kind of mysterious in different sorts of ways. The public response to HIV and AIDS was driven by such intense fear of the unknown and by stigmatization of marginalized people. Organ donation is a topic that’s affected by a complex set of attitudes, and, as my research reflects, whether to become a potential organ donor after you die isn’t a rational decision-making process. It’s really shaped by a lot of strange stuff like your superstitions and existential disgust.
When you think about it, organ donation is such a weird issue because you’re talking about taking the organs out of a dead person, and you put them in a dying person, and that dying person kind of comes back to life. There’s something like a resurrection. There’s something miraculous there, something of the supernatural. It’s the stuff of horror films, in some ways. Yet we’re asked to participate in the process with our own bodies in the hopes we might get to do something profoundly good for someone else.
Each topic has its own boogeyman, a piece of the issue that’s very scary, and I think my goal has always been to demystify these things and to try to find ways of providing information that allows people to make meaningful, well-informed decisions. It’s not to persuade them to do what we want them to do, but rather to have all the information they need to make meaningfully informed decisions.
[MastersinCommunications.com] Your recent article, “‘You Need to Be a Good Listener’: Recruiters’ Use of Relational Communication Behaviors to Enhance Clinical Trial and Research Study Accrual,” explores how building communicative relationships with participants can increase the involvement of members of minority and marginalized groups in clinical trials and research studies. What drew your scholarly attention to researching clinical trials?
[Dr. Susan E. Morgan] I was in the middle of working on organ donation campaigns. I had always had an interest in cancer communication, but I was never sure where I wanted to focus: on prevention, on screening, or something else. Then I had a very close friend named Heather MacAllister who was diagnosed with ovarian cancer in 2003. She had just moved out to San Francisco to start a burlesque troupe, so not surprisingly she was uninsured. She really struggled with trying to access care. She wanted to see the best doctors, but she knew she did not have that kind of access unless she found a clinical trial to enroll in.
I told her I would find a clinical trial she could join. Who better among her friends than someone who has a Ph.D., who is interested in health communication, and is accustomed to reading medical terminology? I thought, “I’m going to do this thing,” and I thought for sure I would be very successful. There is even a website called clinicaltrials.gov that existed back then, and it’s not so different in its form or function today. I got on there, and I couldn’t understand anything that was being presented. It was a nightmare, and I was so frustrated.
Fortunately, she found an oncologist who referred her to a great clinical trial that she joined. Clinical trials really did, without a doubt, extend her life. She lived at Stage 3 and Stage 4 for four years. But what I experienced searching for information to help her was so alarming. Thinking about the frustration not only of cancer patients but also of their friends and family members because of the gross inadequacies and incompetency in how we present this information that’s vital to people for any number of reasons — whether it provides access to care, or innovative treatments — motivated me to pursue this line of work.
Unfortunately, she passed away in 2007. She was an extraordinary person and so many people grieved her loss. A lot of us had a lot of trouble wrapping our brains around the world existing without her in it. I think about how bringing your whole self to your work, the things that matter to you deeply, can help sustain you when the work gets really difficult. It can sustain your interest over a decade or more of just slogging your way through doing the research because you have the chance to make an impact on something that’s meaningful to you personally and to the people you care about.
[MastersinCommunications.com] Your research applies qualitative and quantitative methodologies to understand barriers to organ donation and participation in clinical studies and research trials, and toward designing health campaigns aimed at addressing those barriers. Could you highlight some of the key findings of your research? Are there important ways in which your perspective and approach have shifted or developed over time, as you’ve worked with different methodological approaches, or as you’ve moved from the study of organ donation to focusing on clinical trials?
[Dr. Susan E. Morgan] One of the key findings across all of these areas is that it’s really attitudes that are driving decisions about organ donation and clinical trial participation, not knowledge. We like to think that educating the public is going to accomplish a lot to address the kinds of knowledge deficiencies that lead to health problems. If you think about organ donation, very few of us are transplant surgeons. How many of us have lots of knowledge about the donation process or the governmental bodies that help make policy decisions about the allocation of organs? What we could know about organ donation and clinical trials is almost infinite.
But it turns out that a lot of knowledge doesn’t actually matter. There are only a few core pieces of knowledge that matter, and they tend to correspond to beliefs in common myths. They tend to correspond to pieces of misinformation. In the case of organ donation, that misinformation is coming from the mass media. It’s not hard to become a potential organ donor. You can sign up on a website and join an organ donor registry with little trouble at all, and when you think about it, the risk to yourself is quite low, because you’re dead. You have to die in a particular kind of way, and then you become eligible to save other people’s lives, or certainly improve those lives. The people who are on the registry tend not to believe in popular myths, though they don’t know a whole lot more about organ donation itself than people who say they don’t want to donate.
The interventions that we developed to increase donation showed that the most important thing is distributing well-designed information at the time and place where people are making decisions about joining the registry. That’s usually at the DMV when people are getting their driver’s license. What makes those interventions even more powerful is having people right there who are available to answer questions about organ donation. We trained volunteers who staffed tables at DMVs and they did an amazing job addressing common myths about organ donation. In turn, that helped people feel more comfortable with the idea of registering to be an organ donor.
Clinical trial participation is a lot more complicated. There’s a lot more that people have to learn about in order to provide meaningful informed consent to join a clinical trial. We have to understand things like randomization, what a placebo is, and when placebos are used and when placebos are not used. There are a lot of misunderstandings about that. To understand those things requires real cognitive work. These are difficult concepts for a lot of people to understand.
The question that I am interested in is how we motivate people to engage in this deep-thinking work. That’s been the subject of a lot of what I’ve been doing. Based on qualitative, formative research we created a set of whiteboard animations and evaluated them using quantitative methodologies. Those animations are designed to convey information in a warm and engaging kind of way, not in a clinical way. It’s not a wall of text. It’s watching action unfold and the characters that we used in the animations are designed to make those topics much less scary. (You can watch one of the animations on YouTube.)
The other thing we created was an interactive information aid. It asks the user to answer a series of six simple questions. These six questions focus on reasons people participate in clinical trials, like altruism, or key barriers to participating like medical mistrust or whether they have health insurance. The responses to those questions directly relate to those concerns and facilitating factors.
One of the key findings of our evaluation of our information aid is that interactivity helps. Getting people involved with the presentation of information that is directly relevant to them personally makes the intervention more effective. People tell us, “this is what matters to me” and then the information we present to them is specifically adapted to their concerns. That’s one of the mistakes that people who create campaigns often make. They think, “This is what we need people to know,” without investigating what the audience members themselves say they need to know in order to make an informed decision. We need to center the end user, or the patient, or whoever it is that we’re asking to consider a particular behavior. We need to find out what they need and then we need to give it to them.
The teams I lead or work with are always trying to focus on what those barriers are, what the motivations to actually engage in those behaviors are. From there you can build an intervention around those things. To discover what really matters you have to engage in that qualitative research. It’s always good to know what research has already been published, but when I started with organ donation there was very little literature. This was in the late-90s. Most of the research that did exist was quantitative survey research.
People in marketing were doing a lot of this stuff, asking how we ought to market organ donation to the public, which is problematic in and of itself, but the initial inventory we were using was a 40-item questionnaire about knowledge on organ donation, and we discovered that basically only six of those items even mattered to donor status. If people got 34 of these items wrong, it didn’t have an impact on their decision to become organ donors. There were just a few things that corresponded to myths about organ donation that were associated with someone’s willingness to be an organ donor.
That’s where we ended up focusing our campaign messages; communicating to people, “Here’s why people can’t steal your organs and sell them to the highest bidder,” “Here’s how a hospital system is structured and how the organ allocation system works.” Addressing each of these issues has its own challenges. Not all of these explanations are very well suited to a billboard. You have to boil it down to 6-10 words for a lot of ads and our messages were often too complex for traditional advertising strategies. This is why combining mass communication campaigns with interpersonal outreach is such an effective strategy.
In terms of surprising things that we’ve found with clinical trial communication, it’s that this really exists in this complicated ecosystem. How people feel about an institution really colors how they think about a clinical trial. Part of the problem is that they’re sometimes getting recruited for clinical trials by some pretty sketchy organizations, particularly in poor, urban areas. Some of the people who recruit for outsourced organizations are not medical professionals and they’re not well educated in the research that they’re asking people to consent to be a part of. Unfortunately, academic medical centers which do a much better job of this are being painted in with the same brush in the minds of potential participants.
It has also become very clear that the human connection is what motivates people to process information about clinical trials. That relationship between a study staff member and the patient or prospective participant matters a lot to whether they’re willing to engage in the hard work of thinking about joining a clinical trial. We need to pay attention to the entire system that affects accrual to clinical trials. One of the system-based issues that affects that connection between a staff member and a patient is whether or not clinical research coordinators are afforded the kind of time it takes to spend with a patient, figuring out what matters to them, what’s important to them, who they are as a person.
One of the biggest fears that participants have is that the system doesn’t care about them and they’re going to be treated like a guinea pig. That clinical research coordinator is the first line of defense against that perception. They’re the first person they encounter who says, “You are a human being and I’m going to treat you like a human being and make sure that nothing bad happens to you.” We have to do that in each interaction that we have in that environment. A lot of times we want efficient recruiting and people who oversee recruitment don’t want staff to spend an hour chit chatting with someone who isn’t going to participate. It looks like chit chat but it’s not; it’s an important part of establishing trust.
[MastersinCommunications.com] Over the course of your career, you have contributed to a number of health campaigns promoting organ donations and other health behaviors. Could you describe the experience of working on health campaigns? What is the process of translating research into mass media campaigns and other forms of community engagement, like workplace campaigns and driver’s license bureau initiatives?
[Dr. Susan E. Morgan] I think in some ways it’s a total orientation. In terms of my background, I grew up working class, my father’s an immigrant, and both of my parents complain about paying taxes. They didn’t hold a lot of value in universities and what universities did. They wanted to know that their tax dollars are really working for them and provide a benefit back to them as members of the public. That’s affected the kind of work I do and what I prioritize.
I think that we have a lot of social scientific work that focuses on what I would call these “spaghetti and meatballs” models that map the quantitative relationship between many different variables. When we do that, I think we’re scratching an itch that relates to our curiosity about the dynamics of a phenomenon and we like to nail that down with numbers, but we’re not really necessarily looking at variables that are intervenable. I like to focus on things that we can target or change in some kind of meaningful way, or an audience that we can segment and target specifically in order to improve outcomes.
Given my background, I’m a very pragmatic person. I’m always trying to think, “What is it that we’re really trying to do here? What will make a situation better? What will improve it in the minds of the people that we’re trying to help?” This isn’t about wielding our own power or engaging in mind control by manipulating a few of these message variables. It’s not like, “Now they’re going to agree with this statement or disagree with this statement because of my framing of the issue.” I don’t want to play mad scientist. I want to make a tangible improvement to a circumstance that needs changing.
Considering the end user, considering the problem, is really important. That helps you set up your research in such a way that you can translate it into practice. People who test those spaghetti and meatballs models with survey data have a much harder time translating their research than I do. For me, it’s pretty easy. If you look at my program of research, the organ donation work was published over 10-12 years. It’s not one or two or three studies, it’s a lot of studies, and it culminates in the intervention, and the evaluation of the intervention. It’s the same way with clinical trial communication. I’ll end up retiring still pursuing this specific line of research and you will be able to track a clear progression over time toward this end goal.
In terms of theoretical applications, a lot of the work on clinical trials is really atheoretical, which is unfortunate. As we conducted our qualitative work, we discovered that the Elaboration Likelihood Model maps really well onto what patients tell us is important to them as far as clinical practice and also what research coordinators tell us really matters in those interactions. We also found that patients are engaged in an uncertainty reduction process. They’re trying to reduce their uncertainty about how participating in a clinical trial is going to affect them, partly by trying to involve their family members in that process of decision-making.
What we’re planning to do with this information is to develop a communication training program for clinical research coordinators based on a set of communication best practices that emerges from that data. For that, we’re planning to apply a communication competency framework. We have what I think is a pretty sophisticated way of quantitatively triangulating the effectiveness of that program when we’re done with that. After we assess the success of our approach, then we’re going to look at the theoretical models, and see if the models we use are actually supported by the evaluation that we do. It’s important to use theory as a foundation for interventions, but it’s also important to go back and reevaluate the strength of that theory when you’re done evaluating an intervention or campaign.
I do want to make sure I explain that all of this stuff doesn’t happen inside my head. I work with teams of really talented, super smart people, who have all been rigorously trained or who are outstanding members of community stakeholder groups who provide reality checks and help to inform our work. With organ donation research, I was working with Walid Afifi who is renowned as an interpersonal communication scholar. I was working with organizational communication scholars on these organizational organ donation campaigns – people like Tyler Harrison and Shawn Long helped with those components.
Mike [Michael] Stephenson, who is now provost at Sam Houston State University was on that team. So was Tom Reichert, who is Dean at the University of South Carolina. He was our advertising person, and he shares my interest in message design work. We had a great team of people. If anyone is interested in what makes teams successful, I’d recommend the research on the “science of team science.” I think it’s valuable to know best practices for collaboration so you can make the most of everyone’s expertise to create something that’s specific and impactful.
[MastersinCommunications.com] In a number of research articles, you have explored the impact of the mass media on organ donation, both in terms of its direct effects on willingness to donate, and in terms of the impact media representations have on family communication surrounding donation. What have been your takeaways regarding the significance of media representations to health behaviors?
[Dr. Susan E. Morgan] There’s a theoretical framework that is incredibly important, that really has shaped a lot of my work and my thinking, even when it’s not expressly included in my publications. It’s called social representations theory and was created by [Serge] Moscovici. He pointed out that, under very specific circumstances, the media has a big impact on our attitudes toward a topic, and that’s when it’s not well known or well-understood by most members of the public.
Moscovici also says that when an issue has something mysterious about it, something that’s a little bit weird or spooky, we have to work harder to make sense of it. Organ donation fits that perfectly. One of the key areas Moscovici was working on was genetically modified foods and that’s where a lot of work on social representations theory application has focused. Europeans have called them “Frankenfoods” in the media.
Most of us don’t really understand how you can take a gene from an animal and stick it into corn and have some desirable trait emerge from the union of two things that shouldn’t go together. Moscovici specifies, “Here’s what needs to happen for those negative attitudes to have a societal impact.” We have these ideas in our head that can be shaped by the media, but then those attitudes are more or less solidified as we talk to members of our communities. There’s this cognitive and social processing through our interpersonal communication. That’s where we really see a big impact of the media. It’s when the media shows us something so vivid that we have to talk about it with other people who might also care about that topic. If we aren’t already knowledgeable about the topic and it seems strange or scary, the media and our interpersonal conversations help us make sense of the situation.
There’s not the same kind of intense focus on clinical trials in the media as there is with organ donation, certainly not in this sensationalistic kind of way. There are exceptions. If you love watching House, for example, this is a doctor who is very unorthodox, who makes up his own rules and who doesn’t care about breaking rules. Americans love that. The show represents this guy who would violate all these rules we have for clinical trial participation. His attitude was “catch me if you can.” That’s not the reality of what happens in academic medical centers. But it makes for interesting television. The problem is that it also creates medical mistrust.
One thing to remember with media impact is that seeing is believing. If we don’t have a body of experience to draw from, when we’re transported into our favorite shows it really becomes a set of proxy experiences. When there is an absence of counterinformation to contradict what we see on television, or if that accurate information isn’t readily accessible, this makes inaccurate media depictions more impactful. Sure, you could go look it up online and fact-check it, but no one is going to make that effort.
The problem is that no one is presenting that counterinformation in ways that are nearly as compelling as, for example, Grey’s Anatomy, where they’re showing you instances of phenomenal corruption. They’re killing people to get their organs. They’ve got two doctors wrestling over a gurney, as the young resident is saying, “No, but he’s not dead yet,” and the senior guy responds, “Oh, they’ll be dead by the time we get to the O.R.” You’re sitting there thinking, “Oh no!” You feel that, and you’re scared, and you’re thinking, “What would it be like if I were the person who wasn’t dead yet?” Having proper information on a website is no match for a compelling, sensationalistic depiction on entertainment television. It’s vivid, it feels real, and it’s happening to people (or characters, rather) you know and care about.
[MastersinCommunications.com] Your co-authored book, From Numbers to Words: Reporting Statistical Results for the Social Sciences, provides a generative guide for researchers seeking to translate quantitative research into accessible and compelling prose. Could you provide us a bit of background on how this project came to be? What are some of the challenges in writing about statistical research, and why is it so important for quantitative researchers to learn how to clearly write and communicate about their work?
[Dr. Susan E. Morgan] One of the nice things about qualitative research is that it’s fun to read. You’re hearing many different voices and you get a much richer feeling for what the phenomena is. It’s easy to prefer reading qualitative results over quantitative results. But quantitative research can tell a story too. I think by keeping in mind what our end goal is for the reader and what we want them to come away with understanding can help us write in a clearer fashion.
The backstory on how the book came to be is that Tom Reichert and I were in the same cohort in graduate school and we were taking quantitative methods and statistics classes and our professors expected us to analyze a data set and write up the results. The thing is, the professors didn’t teach us how to write up the results. We got really frustrated. How do we know what goes first? What goes in parentheses?
We started collecting all these examples of what appeared in journal articles, and we kept them in fat file folders. We’d sit in a coffee shop and laugh about how one day we should turn this into a book. Then one day it occurred to us we really should turn it into a book, that we could do that. That’s what happened. Tyler Harrison joined us and helped us push that book to completion. At that point we had already graduated and weren’t sure whether we would finish the project.
It got picked up by a publisher, and, from time to time, I still get fan mail about the book, which is really terrific. Everybody struggles with that and nobody really teaches it.
[MastersinCommunications.com] Do you have any advice you might give to students who are interested in health communication and health campaigns and are considering pursuing a graduate degree in communication?
[Dr. Susan E. Morgan] Focusing on questions that are meaningful to you, knowing why you want that graduate degree, is really important. Graduate study is difficult and knowing exactly what you want to get out of your education is really important. I think going to the best possible program that will admit you is really important. When you think about what the best possible program is, it’s not really about the rankings. The rankings that we have are really outdated.
Figure out the programs that have a really strong reputation. You could ask your undergraduate faculty and mentors what they might recommend. When you’re thinking about the societal questions that matter the most to you, do a little bit of research, even on Google Scholar, and identify who the faculty members are who are working in that area, who is answering those questions, and see what programs they’re teaching in. If there are at least two people in the same department working on some of those questions or related questions that can be helpful too, because, of course, faculty members come and go. If there’s a real emphasis on those questions in a particular program, that’s going to provide some stability and give you a diversity of options in terms of who is going to be your advisor. If your relationship isn’t great with one person, chances are it will be much better with somebody else.
Go visit that program and talk to other graduate students who are already enrolled in that program. They will be candid, in my experience. They will tell you everything that maybe the faculty wished they could say. They’re going to be pretty open and honest.
I would also advise that, when people are in a graduate program, of course it’s important to work hard, but it’s also really important to connect with your fellow graduate students. As it turns out, those people will be your colleagues for the rest of your life. They provide so much meaningful support, not only while you’re in a graduate program, but if you go on for doctoral level work, these will be people who support you in the tenure and promotion process, who will celebrate with you, who will hold your hand when you’re working on a difficult revision for an article. That’s really helpful. Of course, having fun is really important too, because it provides that stress relief.
Finally, if somebody is wanting to engage in social scientific research, this is really very much a team process now. Picking your collaborative partners well is essential. If you pick the right people, you’re probably going to have this exciting, joyous, stimulating experience. If you pick poorly, you’re going to be tied to some people who make you miserable for years. You have to be careful. There’s a body of literature on the science of team science. I’ve published articles in this area, and it’s a pretty big field now so I would really suggest checking that out.
Thank you, Dr. Morgan, for sharing your insights on health communication, health campaign design, the influence of the mass media, and more!