Earlier this year, Kerin Adelson, MD, chief quality officer and deputy chief medical officer for Yale Cancer Center and Smilow Cancer Hospital, shared her experiences leading the implementation of Via Pathways at Yale. She explained how they made a business case for pathways and engaged physicians.
Journal of Clinical Pathways (JCP) sat down with Cary Gross, MD, Yale School of Medicine, to dive deeper into Yale’s aim to increase the weight of the patient’s voice in creating and implementing clinical pathways. We briefly touched on the new clinical pathways they are in the process of researching and designing.
How would you define a patient-centered pathway?
Dr Gross: A truly patient-centered pathway is one that goes beyond a synthesis of evidence by physicians and researchers into a specific treatment recommendation. Rather, a patient-centered pathway would incorporate patients at every step of the process, recognizing that different people could make very different decisions when faced with the same choices. That is, patients should contribute to the development of pathways, identifying treatment outcomes and potential treatment burdens that are important from their perspective. Pathways should enable patients—working in close collaboration with their oncologists—to make informed choices.
To be sure, one could argue that it is very difficult for patients to gain a firm understanding of all the risks, benefits, toxicities, and different treatments. One might say, “That’s why people do their oncology fellowship”—to learn about all these different treatments that are available and the evidence supporting them. On the other hand, patients are the ones that need to drive the decision-making; they are the ones who are taking the treatments and exposing themselves to the risks. We have to figure out a way to translate the complex trade-off of risks and benefits, as well as the uncertainty about what we know and what we don’t know.
Can you elaborate on why it is important to continue to design quality improvement methods and resources for patients specifically?
Dr Gross: First of all, pathways are sorely needed because real-world practice is not only becoming more complex but also more variable. For instance, we looked at some preliminary data for patients with advanced-stage lung cancer and found that, in real-world clinical practice, there are over 40 different first-line treatments that are being used. We need to figure out how to boil down the different options, so that we are not asking patients to choose among 40 different treatments. This is where pathways can be incredibly useful—by finding a few options, tailored to a patient’s clinical characteristics and preferences, that are most aligned with his or her goals.
Secondly, we need patients to help us design and implement studies. As newer cancer treatments are becoming more complex and more costly, it is critical that we figure out how to work with patients to help us identify which questions are most relevant to them, and also to encourage patients undergoing “real-world” cancer care to be enrolled in studies and to share their data so that all patients are generating knowledge that can help inform the care of subsequent patients.
In your opinion, how do you balance the standardized nature of pathways with the individual needs and preferences of an individual patient? That is, balancing the need for patient-centered care as well as high-quality, evidence-based care?
Dr Gross: You touch on a key issue. There are these opposing tensions, where on the one side, people are getting 40 different treatments. Even if there is only minimal evidence to compare them, it is highly likely that there are one to three “best options” that are suitable for the vast majority of patients. It is not only about clinical outcomes. After all, if there are patients who are getting these $100,000 treatments and if, in some cases, they are no better than $10,000 treatments, we cannot afford to keep paying. It is utterly short-sighted and self-defeating to ignore costs, particularly because many patients—even those with insurance—are suffering substantial financial toxicity. We need to pare down the options.
On the other hand, we still want to enable patients to make decisions among the reasonable options. We are saying to the patient, “For your characteristics, here are the one or two treatments that are the best when comparing their efficacy, toxicity, and cost.” I am increasingly concerned that we are going to start emphasizing this trajectory toward creating these pathways but leaving patients out of that conversation.
Standardization is a laudable goal, but standardization needs to be done in partnership with patients helping us make our key and final decisions.
The clinical pathways you are currently working on: do they have various arms or paths to follow in light of patient-identified factors, like physical, psychosocial, and family factors?
Dr Gross: Absolutely. The idea is to build upon this preliminary schema of looking at only those three characteristics of a treatment—ie, clinical efficacy, toxicity, and cost—to incorporate additional patient factors and priorities.
This is a simplistic example, but imagine a patient is a concert violin player. There are a few different treatment options. One of them carries an increased risk of nerve damage, while the other does not. The violin player might say, “For me, the ultimate priority is being able to continue to play my violin. I want to know which treatments are the most effective given that singular focus of mine.” Other patients might say, “A little nerve damage is okay. I am more worried about the treatment burden on my family. I cannot be coming in four times a week. I am concerned about the high risk of hospitalization over the next 6 months. I need to be there for my kids.”
The key is to first understand what is most important for each individual patient. Then, we need to figure out a way to present the existing treatment options in a way that patients can see which ones will increase the likelihood of leading to the health outcomes that are most important to them.
When your pathways go live, are you anticipating making your patients aware that they are being treated on a pathway?
Dr Gross: We are still in the research phase, working with patients to determine which outcomes are important and then using those outcomes to create treatment pathways that are not only responsive to general assessments of outcomes and toxicity but also applicable to individual patients.
Eventually, after we complete our prototype, we will compare patients who receive these new patient-centered pathways to those who receive traditional care. We want to look at the outcomes, such as patient satisfaction and decision regret, to see what the impact of these pathways is on the patient experience.
In the broader patient care arena, you raise an important question about transparency with patients about the use of pathways. Certainly, nothing needs to be hidden with regard to the use of pathways as part of routine patient care. We should let our patients know that we are using pathways; we should say something along the lines of, “This is the company we are using. We are trying to make care more uniform. Here is the reason why.”
