Cost-of-care conversations: How can health care be more transparent?

In this interview, Nora B. Henrikson, PhD, describes her new study to identify better ways for patients and providers to talk about how much the patient pays.

Nora B. Henrikson, PhD

Kaiser Permanente Washington Health Research Institute (KPWHRI) recently received a $250,000 grant from the Robert Wood Johnson Foundation (RWJF) to study how patients and their doctors can have better conversations about the costs of care. As one of a whole portfolio of projects that RWJF recently funded in this area, the project will help identify “best practices” for making tools and resources part of regular clinical workflows.

In this Q&A, KPWHRI’s Nora B. Henrikson, PhD, MPH, describes her team’s approach.

Q. As the principal investigator for this project, can you tell us why this is such an important issue?

Dr. Nora B. Henrikson: In most health care organizations, we don’t do a very good job of helping our patients understand and prepare for the costs associated with health care.

Our earlier research, which was funded by Group Health’s Partnership for Innovation and the National Cancer Institute, found that both people with cancer and their physicians want to be more informed about the costs of treatments before they start cancer treatment, either to help them with treatment planning, to help connect patients with resources to help, or just to help patients plan for upcoming expenses. Not only that, it is well established that people who experience trouble with the financial side of cancer care — called financial toxicity or financial harm — are at higher risk for poor health outcomes. They may worry about losing their retirement savings, not being able to pay their mortgages, and are more than twice as likely to file for bankruptcy as people without cancer.

Financial harm can leave people quite compromised and affect their quality of life and even the course of their disease. Even people who are not at risk for serious financial harm change their spending habits during cancer treatment. Another of my earlier studies found that our members overwhelmingly want to know more about the costs of treatment, and want those conversations to start with their providers. Our team has come to view cost-of-care conversations as an important part of patient-centered care for all patients.

Q. How does your project address these problems?

NBH: Our grant is aimed at documenting what a patient typically goes through in their journey to find cost information, and also the processes that health care teams encounter when they try to help a patient with cost questions. Over the next year, our KPWHRI team is partnering with researchers at Kaiser Permanente Northwest’s Center for Health Research (CHR) in Portland on the project, led by Matthew Banegas, PhD.

Our team here at Kaiser Permanente Washington includes KPWHRI’s Andrea Hartzler, Catherine Lim, Leah Tuzzio, and Aaron Scrol and Kaiser Permanente Wahsington oncology chief, Dr. Eric Chen. Dr. Veena Shankaran, an oncologist at Seattle Cancer Care Alliance and associate professor at the University of Washington Department of Medicine, is serving as an advisor to the study.

Q. What methods will you use?

NBH: We’ll be doing a human-centered design study. We use mostly qualitative research methods, doing in-depth interviews and clinical observations with cancer patients, their family members, and all the staff who they’re involved with as they seek information about the cost of their care. Based on what we learn, we’ll also design prototype workflows and example reports for providing cost information to patients, and ask patients to give us feedback on them.

We’ll then prepare a report suggesting one or more workflows that describe how to serve patients’ financial needs. We’ll identify all the handoffs that happen as well as any potential breakdowns in the process and suggest ways to overcome them. We will make recommendations that other health care organizations can use to design work flows and information for patients that incorporate cost-of-care conversations efficiently.

Q. So that means connecting the dots among lots of people and processes?

NBH: Right. Cost-of-care issues are unique in that they span many parts of a health care organization. So we’ll be working closely with staff from the Oncology service line including doctors and nurses, and the Pharmacy Division and Group Practice Division. We’re also working with Kaiser Permanente Washington’s Customer Service unit and Patient Financial Services.

Q. What makes it so hard for people to get the information they need?

NBH: Many things. For example, health plans are increasingly offering more options to purchasers. That means individual patients have highly variable coverage. Everybody has a different level of co-insurance, different caps on out-of-pocket expenses, and so on. Also, health systems typically handle information about cost of care after-the-fact. We treat patients and then tell the business office what we did. Then the business office figures out what it all cost and bills insurance and patients. But to meet patient’s needs, we need to learn to do it prospectively, which means that the clinical and business groups have to interact in new ways, earlier in a patient’s experience. They also need to inform patients in ways that are easy to understand. The current situation makes it hard for patients to plan ahead for expenses.

Doctors and other providers appropriately focus on getting the best care for each patient. But providers rarely have the information, expertise, or — and this is a big gap — the time, to address patients’ financial questions. We know that doctors want to serve their patients in this way, but we also know they will need support. The exact form that support should take is not clear. This is especially difficult for people with cancer, where treatment can be highly individualized and very expensive.

Q. Can you give examples of where such help might make a difference if it was available?

NH: Say a physician is recommending a very expensive medication — one that that costs tens of thousands of dollars. The patient may want to know what part of that they will be responsible for. Is it $5,000? Is it $10,000? And how much of their deductible have they already met? Is there an alternative that would work just as well but not cost so much, even if the patient has to come in to the clinic a little more often? It can be helpful to have that information available when the provider is discussing treatment.

It’s not that patients are going to be denied treatment because they can’t afford it. Doctors don’t let that happen. But patients want to be able to plan for their medical expenses. There’s so much uncertainty and worry that comes with cancer diagnosis. If we can lessen that burden by providing better financial information, we should do so.

One patient told me that she experienced real anxiety every time she saw mail from the health plan in her mailbox, for more than a year after her cancer treatment ended. She was anxious because she had no idea what amount of money she would be billed for or when the bills would stop coming.

Another patient found, after some changes to his Medicare insurance, he was suddenly getting large bills for an ongoing treatment (Lupron) that was previously covered completely. From his perspective, he had the same insurance, was receiving the same treatment; why, all of a sudden was he billed with no warning? We could have avoided that if we had known to inform him of these changes ahead of time. To do that would require having the health care team involved.

Q. How did you first get interested in this issue?

Early in my career I managed a patient education and support program at the Lineberger Comprehensive Cancer Center at the University of North Carolina. I helped many patients try to find answers about the financial implications of their care, and saw what a huge impact cancer has on people’s lives even beyond the disease itself. Getting rides to treatment, impacts on work or volunteer commitments, child care, planning vacations — cancer seemed to touch everything. I also saw how, for many patients, each choice seemed closely connected to their health care team, because their cancer care was top priority. I saw that there was a real need to understand the patient’s perspective more clearly, look at the health care system from their viewpoint, and do what we can to make it better.