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.”

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