Cancer patients sometimes need to make extremely difficult decisions regarding treatment options, particularly when certain treatments could potentially result in death or life-long disabilities. Under these circumstances, physicians need to be confident that patients fully understand the risks involved.
At the Hematologic Malignancies Program at the Rutgers Cancer Institute of New Jersey (RCINJ), physicians were concerned about how the treatment outcome probabilities were being communicated to patients and thus how patients understand the potentially serious risks of using Bone Marrow Transplant (BMT) as an option for their cancer treatment instead of chemotherapy. It is not only the challenge with understanding probabilities of risk, but that patients face such uncertain outcomes while being gravely sick and facing a very high-risk medical decision.
For help enhancing their communications strategies, they contacted SC&I. The result is a new collaborative project between several faculty members and graduate students at SC&I and the Hematologic Malignancies Program.
Assistant Professor of Communication Lisa Mikesell, a member of the SC&I faculty team, said, “The project aims to address the communication challenges and decision conflict common to complex medical decision making contexts where adverse treatment outcomes are difficult for patients to understand, and the realities of adverse treatment outcomes (what it's really like to live with such adverse outcomes) are also difficult for clinicians to communicate. Bone Marrow Transplant (BMT) is one such complex medical decision and is the focus of our team's work.”
In addition to Mikesell, other faculty members involved are Mark Aakhus and Sunyoung Kim (LIS). SC&I graduate students involved are Beatrice Trinidad who is getting her MS in Computer and Information Sciences and two doctoral students in the Department of Communication: Sarah Fadem and Allyson Bontempo.
The team at RCINJ includes Roger Strair, M.D., who is the chief of Hematologic Malignancies/Hematopoietic Stem Cell Transplantation at CINJ and professor of medicine at RWJ, and his team includes Dennis Cooper, M.D. and their two transplant coordinators Jackie Manago and Mary Kate McGrath, among others.
“The decision to either opt for BMT or continue with chemotherapy treatment can be complex because there is a risk that the BMT treatment can lead to significant adverse and lifelong outcomes, even death, Mikesell said. “So the decision is often not an easy one. When we first met with the clinical team, they were concerned that patients weren't fully understanding the likelihoods of these possible adverse outcomes or how such outcomes would impact their quality of life. And from their perspective, they wanted to make sure patients were understanding the realities of these possibilities before they made their decision to receive BMT in order to reduce decisional conflict and decisional regret that might follow a decision to receive BMT.
“So working with the clinical team and veteran patients who have undergone BMT or made the decision to not receive BMT, we are designing a type of decision support system - I say ‘type of’ decision support system because as the project has evolved, we've realized that patients themselves have strong desires not just for support in making a treatment decision but also for what follows the treatment they receive (see next section). So we've been using an iterative, participatory design approach to develop the support system. And we've been working to align clinicians' and patients' understandings into a single system that can meet different sets of needs -- for example, while clinicians want patients to have the numbers (the likelihoods that they might experience some adverse treatment outcome given their health status, age, etc.), patients often don't want those numbers; they express wanting engagement with the clinic team that helps them remain optimistic in the face of challenges. So we are now testing different design options that are working to resolve these sorts of tensions between communicating the realities of treatment (a perceived clinical need) while remaining optimistic (a perceived patient need), and ultimately aim to make the system participatory when it is implemented in the clinic.
In the Q&A below with Mikesell, she explains the team’s findings, her inspiration behind taking on this research, and ways this collaboration will have an impact at CINJ and beyond.
What are the findings of your research?
While the project is still in progress, what we found early on that has shaped the project and our goals in significant ways is that clinicians and patients seem to be treating the decision quite differently. While clinicians see the decision as especially complex and difficult, many of the patients we've talked to don't treat BMT as a choice or decision but rather view it as their only option to recovery. As I noted above, they consistently make it clear that they want support not just during the moments leading up to the decision they must make, but express strong desires for support after the decision is made and after the treatment is received. So there is a fundamental difference in where the "problem" is and what is perceived by different stakeholders in needing resolution.
For patients, the struggle they describe is often centered around how they are making sense of a new life context and how they are making sense of the disruptions that not only illness but also treatment has caused. This is a complex, nonlinear trajectory for recovery and one way we are approaching this is to design a system that is not strictly built around information-exchange but is strategically designed to facilitate sense-making processes. We are incorporating both clinical information (like a risk calculator) along with video vignettes that include clinicians, caregivers/family members, and other patients discussing a variety of experiences before they made the decision about BMT, during the decision-making process, and post BMT treatment. New patients are able to view these other patient testimonies and incorporate into their own story to better make sense of where they are and what they might expect -- we are scaffolding how patients might navigate these videos so that they are able to know which videos may be most relevant to them, for example which patients match their illness characteristics and may serve as better models. However, users may view any and all videos they want without restrictions. We are now testing some of these design features.
What are the important implications of your work for cancer patients and/or clinicians, and the general public (lay people)?
I think the work of bringing patients, clinicians and family members/caregivers together around a common task has had valuable 'local' consequences in this particular setting because it exposes assumptions that are often left unarticulated about how different stakeholders perceive and understand the challenges and experiences of each other. A participatory design project like this can often draw those assumptions out and facilitate dialogue, which is both useful for reshifting how patients and clinicians make sense of the context they are in. And Dr. Strair was the first to recognize this possibility amongst clinicians – for example, that just by bringing clinicians together to consider what the common practices around communicating risks with patients should be, there is a more unified institutional understanding that may have been lacking. Beyond implications for the local clinic context, our early findings about these different ways that stakeholders are understanding the problem space is illuminating for how stakeholder engagement is often done -- we often work to identify consensus but there's value in identifying differences and seriously listening to those differences and why they exist. For patients, we've worked to illuminate more clearly the realities and risks that they didn't necessarily perceive to be a problem but are now able to recognize as an important part of informed decision making (we will empirically examine if highlighting these decision making components for sensemaking makes a difference for patients' experiences with decisional conflict). And for clinicians, it is a reminder not to underestimate the importance of long-term support well beyond the decision and the delivery of treatment. Of course, clinicians know this already to some extent just given the complexity of a treatment like BMT, but we hope it helps to balance clinic priorities and think about clinic practices as embedded within the sensemaking framework through which patients understand their circumstances -- that institutional tasks are not merely about exchanging information or translating expert knowledge to patients. (There are also implications for the process of designing for multiple and diverse stakeholders working to achieve a shared goal but from quite different perspectives.)
What are the factors that inspired you to take on this work?
There were many. Before coming to SC&I, I worked for several years in the Center for Health Services and Society at UCLA with some wonderful clinicians and health services researchers, many who are experts in community-engaged, partnered research. For me this project was an opportunity to integrate my Com background, a growing interest I have in partnered research to develop health interventions, and my prior work in health services research that centered around practices of patient engagement. So intellectually the project intrigued me in a number of ways given its focus on intervention design for complex medical decision-making, stakeholder engagement in the research process, and careful attention to the experiences of multiple stakeholders.
I was also inspired by the opportunity to work more closely with really smart and interesting colleagues and graduate students at SC&I and to learn firsthand from the clinical team at CINJ whose members are extraordinarily dedicated. Their commitment to their work and to reshaping informed consent in ways that are truly patient-centered is in itself inspiring. They've also just been incredibly warm and welcoming. And while we still sometimes come to the table with differing perspectives about how to work through a problem or design challenge, I think there's a genuine shared understanding that our differences are going to ultimately lead to an improved process and product in the end. And as we come to know more of the patients and families and learn from their experiences, it is always motivating to think about how their experiences and input have a direct influence in shaping each design decision. It's impossible not to channel their voices directly when our team is working through the various design alternatives.
How are SC&I’s graduate students involved in the project?
We have three graduate students who we have been working closely with, and without their efforts this project would not have evolved: Beatrice Trinidad who is getting her MS in Computer and Information Sciences with a concentration in user experience design has been integral to the development of the system, and two doctoral students in the Department of Communication: Sarah Fadem and Allyson Bontempo. Sarah is now writing her dissertation proposal based on her fieldwork in the clinic; interviews with patients and families; and her related theoretical developments around designing for information, designing for communication, and designing for sensemaking, which have become important distinctions for our team. Allyson has informed the project by carefully considering current clinic practices for patient education and informed consent, which is vital for effective implementation of systems so that any disruption of practice is strategic and planned.
For more information about the Department of Communication at the Rutgers-University School of Communication and Information (SC&I), click here.