Innovative research partnership: Lisa and Roger develop a tool to help patients make complex decisions

Innovative research partnerships: Healthcare edition is a series of profiles about collaborations between Ph.D. communication researchers and healthcare clinicians, and is a part of the broader Innovative research partnerships series. I consider these partnerships innovative because of the creativity involved in initiating and sustaining cross-sector and multidisciplinary collaborative research. Through separate interviews of both partners in the collaboration, I share the unique stories behind such partnerships and their fruits. 

Roger’s perspective

Roger Strair, M.D., Ph.D., who is a chief of blood disorders and medical oncologist at the Cancer Institute of New Jersey, was concerned about the complex decisions his patients face. He wanted to give his patients more tools to make important and complex medical decisions. For example, he described the following hypothetical scenario: a patient faces the choice between two potential therapies. The first is relatively easy to give, and results in 40% of patients being cured. Second, the patient could choose to undergo a bone marrow or stem cell transplant, increasing their chance of being cured to 65%. Yet, a percentage of patients undergoing transplant will have a lifelong disability and some patients who go through the procedure will die sooner.

Lisa’s perspective

Lisa Mikesell, Ph.D., who is assistant professor of communication at Rutgers University, studies patient engagement including the process of complex decision-making. Roger approached her and her colleague, Mark Aakhus Ph.D., several years ago about working together. For this research, Lisa has focused on finding ways to resolve the tensions faced by doctors and patients: patients want optimism (sometimes they don’t want to know their likelihood of mortality) whereas doctors want to provide realistic information to patients without depriving patients of hope. Lisa said patients in this situation often face great uncertainty and decisional conflict. The aim of this research project is to help prevent patients from regretting their medical decision by feeling better prepared to make such a complex, life altering decision.

About the project

The research team conceptualized a multimedia tool that provides these patients who face complex medical decisions with stories of other patients who’ve made similar decisions. To develop and evaluate the tool, they gathered a team including information scientists (Sunyoung Kim, Ph.D., has since joined the team), designers, and an advisory board comprised of patients and clinicians. Their goal is to help patients to make sense of their medical situation by hearing others’ stories and developing their own coherent narrative. Lisa and her colleagues began by collecting pilot data exploring how patients and clinicians report handling the tensions of communicating about complex medical decisions. The team has also developed videos with patient stories that patients can revisit and utilize in different ways over the changing course of their illness trajectory.

About the partnership

Roger said he is generally “untrained” in communication so he appreciates Lisa and her colleagues’ expertise. Roger said they try to have fun while doing this work. He joked that you can’t trust the communications experts because they know how to manipulate words. He said, “you don’t want to play a casual game of cards with a L.A. card dealer, you know what I mean?” Lisa described members of the partnership as “malleable” in that there is openness to working with differing perspectives. Further, people are willing to balance varying priorities and show mutual respect. Roger said, “we don’t agree on everything but we do agree on the fact that there is a great unmet need and it’s a worthy area of study.”

Innovative research partnership: Michelle and Frank improve the D.A.R.E. curriculum

Innovative research partnerships is a series of profiles about collaborations between Ph.D. communication researchers and working professionals in the community. I consider these partnerships innovative because of the creativity involved in initiating and sustaining cross-sector collaborative research. Through separate interviews of both partners in the collaboration, I share the unique stories behind the partnerships, the challenges they face in their collaborative efforts, and the fruits of these partnerships. The series was started in anticipation of my two conferences sessions on research partnerships at ComNet17 in September and NCA in 2017.

Today, we hear from Michelle Miller-Day and Frank Pegueros. They have worked together to revise D.A.R.E.’s drug prevention curriculum based upon evidence-based strategies. Let’s start with what Frank has to say about this partnership.

Frank Pegueros is the CEO and President of D.A.R.E. America.

On what he has gained from the partnershipFrank said that D.A.R.E. has partnered with many researchers and experts over the years to evaluate their efforts because “anything delivered in the classroom should be evidence-based.” Collaborating with Michelle and her research partner, Michael L. Hecht, over the span of a decade has resulted in significant improvements to the curriculum. Frank said D.A.R.E. is in the process of organizing a full evaluation of the revised curriculum, but preliminary evaluations show positive results.

On his role in the partnership: D.A.R.E. provides drug prevention education for elementary, middle, and high school students. Frank said that experts who develop curriculum programs don’t always get to see their program implemented on large scale, but Michelle’s team is committed to seeing the program reach students. Frank added that he believes partnering in this way helps program developers get input and to better understand audiences for their curriculum programs. By partnering with D.A.R.E., the developer’s program avoids getting “placed on a shelf to gather dust.”

On challenges the partnership faced: Frank said that he and Michelle and Michael have worked together for a long time, adding that their partnership hadn’t faced any significant challenges.

On why the partnership works: The fact that “both sides are open” has made the partnership successful, according to Frank. He said both he and Michelle are after the same thing — achieving positive outcomes in the classroom.

Dr. Michelle Miller-Day is a professor in the School of Communication at Chapman University.

On how the partnership got started: D.A.R.E. contacted Michelle and Michael after conducting a search of evidence-based substance use prevention programs. D.A.R.E. ultimately chose to partner with Michelle and Michael to use their middle school  keepin’ it REAL (kiR) program, which had been listed in the national registry for evidence-based programs and practices. The program was found to achieve positive results in several controlled trials and effectiveness studies. Since adopting kiR, Michelle and Michael’s company REAL Prevention has worked with D.A.R.E. to create an elementary program and several high school programs.

On why this research matters: Michelle said that the partnership with D.A.R.E. means their team’s drug prevention program reaches 2.3 million children every year with a curriculum that is evidence-based.

On challenges the partnership faced: Michelle described how her team “D.A.R.E.-ified” the kiR curriculum. This involved incorporating input from multiple stakeholder groups including students, D.A.R.E. officers, and educators, many of whom had differing needs. Michelle said this process took a lot of time but “it wasn’t insurmountable.”

On why this partnership works: The partnership works well because D.A.R.E. focuses on training, marketing, and dissemination of drug prevention, while Michelle and Michael’s  team focus on the science and formative research.

Innovative research partnership: Jeannette and Dave improve risk communication messaging training

Innovative research partnerships is a series of profiles about collaborations between Ph.D. communication researchers and working professionals in the community. I consider these partnerships innovative because of the creativity involved in initiating and sustaining cross-sector collaborative research. Through separate interviews of both partners in the collaboration, I share the unique stories behind the partnerships, the challenges they face in their collaborative efforts, and the fruits of these partnerships. The series was started in anticipation of my two conferences sessions on research partnerships at ComNet17 in September and NCA in 2017.

Today, we hear from Jeannette Sutton and Dave Cokely. Their work together addresses the improvement of communication about imminent threats, as well as quality training on this topic. Let’s start with what Dave has to say about this partnership.

Dave Cokely is an instructor at National Weather Service (NWS) Training Center in Kansas City, Missouri.

On what he has gained from the partnership: After being advised by Jeannette and several other social scientists on improving NWS risk communication messages, Jeannette led a training session for a group of NWS meteorologists who coordinate warning messages. Dave said that Jeannette designed a “brilliant” exercise, asking trainees to get their hands dirty developing messaging in various disaster scenarios. According to Dave, Jeannette’s training session received the highest rating of all sessions over the 4-day class, adding that she had “hit a grand slam.”

On his role in the partnership: Dave said he and his colleagues are frequently asking themselves how to better communicate watches, warnings, and advisories to the public to prompt action. Dave describes his role in the partnership as “start(ing) a two-way conversation” with an expert who had “absolutely critical information” to share with him and his colleagues at NWS.

On challenges the partnership faced: Dave reflected that “it takes work to get the door cracked open for these collaborations,” adding that he sees these type of partnerships happening more often. Dave said that sometimes it is hard to get meteorologists and scientists in his industry to pay attention to social sciences research because it is seen as a “soft science.”

On why the partnership works: Jeannette has a “great presence,” according to Dave, and when she presents social scientific evidence that is relevant to his colleagues, they listen. He said that she has helped him and his colleagues integrate insights from social science into an audience-centered approach to messaging, including a new training series about supporting the public’s decision-making process when preparing for disasters.

Dr. Jeannette Sutton is an assistant professor in the Department of Communication and director of the Risk and Disaster Communication Center in the College of Communication at University of Kentucky. 

On how the partnership got started: Dave contacted Jeannette after he heard her speak at a NWS-hosted hazard simplification conference in 2015, eventually asking her to lead a training on risk communication for NWS. Jeannette was asked to conduct this training again this fall by another contact. Jeannette said she works to build relationships with partners such as Dave so that they can collaborate in the future if an opportunity presents itself.

On why this research matters: Jeannette said she “has the privilege of working with people who are putting out life-saving messages” about disasters. Although Dave wasn’t involved in writing it up, Jeannette is publishing the training exercise she developed in a forthcoming journal article. She added that working with professionals like Dave ensures her research is responsive to the needs of people in the risk communication field.

On challenges the partnership faced: Jeannette said that it takes time and effort, on top of a busy teaching schedule and research agenda, to develop and maintain relationships with practitioners in the field of disaster communication. However, she frequently travels to present at and attend conferences such as the American Meteorological Society and Society for Risk Analysis to share her research and maintain relationships.

On why this partnership works: Jeannette said that she has seen the NWS grow increasingly interested in incorporating social science into their operations. Dave and his colleagues at NWS are interested in some of the same questions she is asking about how people perceive messages and the factors that influence how people interpret them.

See more about Jeannette’s research from University of Kentucky’s People Behind Our Research series:

Innovative research partnership: Chris and Lynsey explore recovery communication strategies

Innovative research partnerships is a series of profiles about collaborations between Ph.D. communication researchers and working professionals in the community. I consider these partnerships innovative because of the creativity involved in initiating and sustaining cross-sector collaborative research. Through separate interviews of both partners in the collaboration, I share the unique stories behind the partnerships, the challenges they face in their collaborative efforts, and the fruits of these partnerships. The series was started in anticipation of my two conferences sessions on research partnerships at ComNet17 in September and NCA in 2017.

Today, I highlight the partnership between Lynsey Romo and Chris Campau, who have worked together on research for a year and a half. Their research explores how students in recovery from drug and alcohol abuse talk to others about their recovery status (or not) given the stigma and negative reactions the students may face. First, we hear from Chris.

Chris Campau is the collegiate recovery program coordinator at Addiction Professionals of North Carolina.

On what he has gained from the partnership: Chris said that he learned from this research that some students in recovery simply “wouldn’t talk about it at all on campus.” This has informed his work in his current position coordinating support for students in recovery. Further, he noticed the empowerment and positivity he saw in students who possessed more communication strategies to manage disclosure of their recovery status. He said this has refreshed his commitment to conducting more recovery message training programs for people in recovery.

On his role in the partnership: Chris started working with Lynsey while he was a non-traditional student at NC State University. As a person in recovery himself, Chris was paid to conduct interviews asking participants who were in recovery about their experiences disclosing their recovery status or not. He asked about how they disclose their status and how disclosures changed based on whether participants were talking with drinking peers, non-drinking peers, or with professors. Chris has also been involved with analyzing data and writing up the research report.

On challenges the partnership faced: When he began his new job, Chris said the project had to be put on hold for several months and lost some steam. He said he felt he has been able to readjust and rejoin work on the research now that he has settled into his new job.

On why the partnership works: Chris said that Lynsey is “an extraordinary human being.” He said that what made the partnership successful is that both parties were equally willing to learn about the other’s work and expertise.

Dr. Lynsey Romo is an assistant professor in the Department of Communication at North Carolina State University.

On how the partnership got started: According to Lynsey, the partnership began when an addiction treatment professional in Raleigh who had read a previous research article of hers about communication among nondrinkers set up a meeting to introduce Chris and Lynsey.

On why this research matters: This research expands on some of Lynsey’s previous research about the difficulty faced by former problem drinkers in social situations. Studying the social experiences of people in recovery and gathering communication strategies they use can help in developing support for this population in managing their new-found sobriety and identity.

On challenges the partnership faced: Lynsey said that, generally, doing applied research with community partners can sometimes take longer since you “lose some control of the process.” This can be a challenge since she is under pressure as a faculty member seeking tenure to publish her research in a timely manner. However, she said this project has been a win-win that is valuable to the community and to the academic research community.

On why this partnership works: Lynsey said that having funds to pay Chris for some of his early work interviewing participants while he was still a non-traditional student helped get the project off to a strong start. Lynsey said she and Chris have a great rapport. She added that he brings a lot to the table because “he is so passionate and has first-hand knowledge” about the research topic.

Disclosure: I have previously worked with Lynsey on research an am a co-author on the paper cited in the interview. Further, I have previously met Chris and his colleagues through research with Lynsey. I was not, however, involved in the research project discussed in this profile.