Editor’s Note: Heart disease takes a heavy toll. In fact, it is the number one cause of death in the United States. Fortunately, new heart medications have the potential to reduce mortality and hospitalizations. However, some of these drugs carry hefty price tags, especially for patients with Medicare.
While cost is an important factor in treatment decisions, physicians often lack patient-specific information about out-of-pocket expenses. Cardiologist and researcher Dr. Neal Dickert and his colleagues from Emory University School of Medicine decided to study what would happen if this information was included during doctor-patient encounters. The study was conducted in collaboration with the University of Colorado School of Medicine.
The researchers partnered with financial navigators from our TailorMed Complete team to determine patient-specific out-of-pocket costs for a list of recommended heart failure medications. In honor of American Heart Month, Dr. Dickert sat down with us to discuss the study’s findings—and what can be done to reduce the financial burden of heart disease.
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TailorMed: Tell us more about your role, both as a physician and as a researcher.
Dr. Neal Dickert: I’m a clinical cardiologist. Most of my work is in a cardiac ICU, so I work with a lot of heart failure patients. My research is focused on ethical aspects of practicing medicine, and specifically, how we communicate with patients to make complex decisions. There’s been a real move towards shared decision-making. There are a lot of ethical and practical complexities around how we operationalize the goal of engaging people in their healthcare decisions.
TailorMed: Tell us about the problem that motivated you to pursue this study, specifically around patients’ ability to afford some of the newer, more expensive heart failure medications.
ND: There were two motivating factors that led us to develop this project. First, we know cost is a significant issue in terms of how people make decisions. And yet, there aren’t often good tools for providing costs. We wanted to explore ways to do that—and how this information would impact patients’ decisions.
Secondly, the emphasis on shared decision-making tends to be in cases where there are medical trade-offs. For example, with certain types of cancer screenings, you trade off the worry about a potential false positive versus the value of early detection. However, with some of the novel heart failure medications that have been shown to be more effective, there’s not a medical trade-off, but a cost trade-off. It’s a preference-sensitive decision. It involves figuring out the right way to engage patients and have discussions around what cost means to them.
TailorMed: You’ve noted that doctor-patient conversations around medication costs tend to be rare and low-quality. Why do you think that is?
ND: I think it’s multi-factorial. First, the information isn’t always present. Let’s say we have a clinician who’s seeing 20 heart failure patients a day. Those patients would likely have a set list of medicines they ought to consider, but each person may have different out-of-pocket costs. Any conversation is going to be impoverished if you don’t have the information to feed it.
It’s not just about raising the issue of cost, but engaging in a robust discussion. There are some clinicians, for example, who feel you can’t put a price on life, so you shouldn’t make medical decisions based on money. I personally think that ignores the reality patients face. There are also physicians who feel they lack the tools to talk about benefits and present a trade-off.
But the elephant in the room is the lack of information.
TailorMed: Absolutely. Now, tell us how the study examined a potential intervention to address this issue.
ND: We wanted to do a functionally randomized trial of what happens when you give people relatively comprehensive out-of-pocket cost information at the time of a doctor-patient encounter.
We used something called the EPIC-HF checklist, which lists recommended heart failure medications along with the classes, the doses, and other information. In collaboration with TailorMed, we added a column showing what the patient would pay out-of-pocket that day for the non-generic medications. Patients and clinicians in both groups got essentially the same piece of paper, but the control group got the checklist without cost.
We didn’t tell the patients or doctors how to use the information, but we recorded the encounters and examined what kinds of discussions took place. About two weeks later, we did a follow-up survey about their perceptions of the encounters and how they used the cost information. After three months, we looked in the electronic health record to see what medicines people were listed as taking.
TailorMed: What were some of your biggest findings?
ND: The primary outcome was positive. We found that if you provide doctors and patients with cost information, they’ll be more likely to talk about it. That’s not shocking, but it counters the view that people are resistant to discussing cost.
Another important finding was a shift away from what we called “contingency planning.” For example, the doctor writes the prescription, and then the patient goes to the pharmacy, finds out the cost, and decides whether to fill it. In the worst case, they may wind up taking nothing for a while, risking hospitalization and death, or they may bankrupt themselves. We saw a decrease in contingency planning in the intervention group. That’s a signal that there were more informed decisions at the time of the doctor-patient encounter.
There were also interesting signals that people in the intervention group were more likely to have started the medicine that was recommended during their encounter. That goes hand in hand with the contingency-planning piece—that people were making decisions they actually implemented.
TailorMed: What are you hoping to investigate next?
ND: We’d like to do longer-term studies with more people. We want to look at whether this intervention really impacts adherence and the specific choices people make.
The big question is, can we see relationships between providing people with robust cost information—and whether they’re able to afford the medicines they choose, stick with them, and hopefully have better outcomes?
TailorMed: In honor of American Heart Month, what do you think is most important for patients and physicians to be aware of when it comes to affordability and heart health? What are your hopes for the future in terms of how the challenges of affordability will be addressed?
ND: In terms of affordability and heart health, there can be barriers for many patients. There are also medication options that enable patients to advance their heart health without risking financial toxicity. The more clinicians and patients are aware of the existing options, the better equipped they’ll be to choose good therapies that reduce bad outcomes associated with heart failure.
There are also some policy-level issues that will have a big impact on this patient population. The $2,000 cap on annual out-of-pocket spending for patients with Medicare Part D coverage will be enormously impactful. In addition to placing a ceiling on what people can expect to pay, it makes cost communication and decision-making more straightforward. For example, a doctor can say to a patient, “Look, your costs will hit this amount over the course of the year. There isn’t a marginal cost increase for you by taking this medication, which we think is a little better than the other one.” The impact of price negotiations will also be significant.
So, in the short term, I think we’ll see some changes in actual cost—and in predictability of costs—for patients with heart disease. That’s going to make access greater. And it’s going to make the process of describing the relative trade-offs simpler, especially in the Medicare population, which is substantial when you look at heart failure and heart disease generally.
TailorMed: Do you think there’s a role technology can play on a broader scale to help facilitate doctor-patient conversations and promote shared decision-making around costs?
ND: I think the role is enormous. The heart space is one where costs are appreciable but not astronomical, and where the patient population is massive. Our patients with heart failure often have diabetes. They may also have coronary disease and atrial fibrillation. Now, you have three conditions with a series of medicines, some of which can be quite expensive.
We need a more comprehensive view of what patients’ costs might be, and ways to facilitate savings and access. The more we can take a technological approach to make this process scalable and accessible for clinicians, the more helpful they’re going to be. The emerging tools TailorMed and other companies are developing to make cost information more available—and to identify cost-saving resources—at a larger scale will totally transform this effort.
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Dr. Neal Dickert is an Associate Professor of Medicine in the Division of Cardiology and the Thomas R. Williams Professor of Medicine at Emory University School of Medicine. He also holds a secondary appointment in the Department of Epidemiology at the Rollins School of Public Health, is a Senior Faculty Fellow at the Emory Center for Ethics, and is a member of the Emory Clinical Cardiovascular Research Institute. Dr. Dickert is Interim Director of the Emory Health Services Research Center, and he leads the Network Capacity Core and Recruitment Center for the Georgia Clinical and Translational Science Alliance. Dr. Dickert joined the faculty at Emory in 2012.
References:
Montembeau SC, Rao BR, Mitchell AR, Speight CD, Allen LA, Halpern SD, Ko YA, Matlock DD, Moore MA, Morris AA, Scherer LD, Ubel P, Dickert NW. Integrating Cost into Shared Decision-Making for Heart Failure with Reduced Ejection Fraction (POCKET-COST-HF): A Trial Providing Out-of-Pocket Costs for Heart Failure Medications during Clinical Encounters. Am Heart J. 2023 Dec 12;269:84-93. doi: 10.1016/j.ahj.2023.11.013. Epub ahead of print. PMID: 38096946.
